Olanzapine: passing out in middle of the night, grabbing and stretching her face, swollen, puffy lips, red “eyeliner” look, extremely pale even though she was in the pool daily.
Abilify: 2 days in- hiccups. First bout was yesterday afternoon for about 3 hours then again in the middle of the night while she was sound asleep for about 2 hours, then another round this morning for about 45 minutes. Also slobbering- lots of saliva in her mouth. Her face is looking a little bit puffy especially around her lips and she’s looking a little pale.
Can y’all share some of the weird side effects your loved ones (or yourself) had experienced on these AP drugs? Up until we started her on Abilify yesterday she was receiving around 1000mg of CBD. It was keeping her calm and agitation was down from around an 8/10 to 3/10. But we were and are still dealing with bazaar delusions and noon stop talking. We’ve cut CBD down to around 300ish mg to introduce Abilify 1/2 tablet supposedly over next 4 days. Called psychiatrist about side effects and awaiting further instructions. The nurse said she’d probably have her stop Abilify and we’d try something else. If the delusions don’t go away on Rx I suppose well just bite the bullet and keep her on the CBD which had NO side effects-to my knowledge and kept her calm. I just hate that’s it’s SO expensive.
Hi there,
I’m sorry you are going through all this.
I had written a long reply and then deleted it. It’s so hard to figure out these medications, and my son hasn’t had the best luck with them, so I’m over-thinking everything I write.
My son has mostly struggled with weight/gain and sleepiness. The anti-psychotic that worked for him without too many side effects for a few years was Geodon.
After a while Geodon seemed to lose its effectiveness and now he’s doing all right on Latuda. I’m leaving out a lot of steps— my son is in his mid-teens, so we took some detours with doctors trying to give him ADHD drugs and other dangerous experiments. It has been so much trial and error!
I hope you find something helpful for your daughter soon. Having a psychiatrist who will really work with you is key, and that can take a while to find. It’s worth it in the long run! I’m sending you positive thoughts.
Thank you. Will they switched her to Risperidone… Not just waiting for Medicaid to approve it. I do much appreciate hearing from others, I felt like I was a secluded like ranger. Her GP just shook her head today. She didn’t know what to say-she was keenly interested in her 2 month treatment in CBD. Sure acted like I should be sainted to be dealing with the situation at hand. I just looked at her in shock. Anyway, thanks again for sharing, I certainly appreciate it.
Hi @Happee, I’d just like to say I’ve been following your story about the love and care you show your daughter, using the “natural” approach, and I’m so happy for you that so far, for the most part, it has been working for you, with the exception of the delusions. If CBD kept her calm and out of trouble, that is so great! You sound like a very caring mother.
My son did very well on Risperidone for 3 years, then it stopped working. Since then, they’ve shoved Abilify, Invega, and Haldol down his throat as well as injections when he refused to take them orally. It was a nightmare.
He finally settled on Zyprexa, and so far, knock on wood, with the exception of the negative symptoms, he’s doing ok. Withdrawn but he still participates or at least gives his best effort to participate. And he gained quite a bit of insight, I’m very thankful for where he currently is.
How I wish there was a sure fire more “natural” way.
Caretakers of schizophrenics are basically saints. It’s an unforgiving disorder that very slow progress is being made for, and those having to deal with the aftermath are pushing a metaphorical boulder up a steep hill, unless the body actually is healing.
Some more issues I wanted to bring up, you may want to avoid mammal meat / dairy (contains the chronic inflammation-triggering sugar Neu5Gc), eggs (80% of schizophrenics are allergic to eggs), and wheat (eating wheat increases the levels of zonulin, a protein that disrupts the gut lining and blood brain barrier integrity. Can’t afford that!)
The CBD just kept her calm. These delusions are just killing me. It’s sooo hard hearing my DD call me a F-ing B! Especially since we do not curse. It takes everything I have to recognize this is not ‘her’, just a mixed up version of mental illness. I’m hoping the Respiridone(sp) will help with the delusions. You can see her head spinning all day. Fortunately, she doesn’t fight me too much on taking meds/vitamins/supplements. Some days she argues, but she always caves in. I’m not sure what I would do with the unwilling cooperation so many run into. On a side note, with the bad side effects of the abilify, I kept a positive attitude today-only cried once. B has had a rough day, but everyone things got intense she’s just grab me and want to be close. It’s hard when she doesn’t want to be touched. It’s hard forgetting or hard remembering how quickly things have changed and keep changing. I’m so grateful for this opportunity to reach out to others dealing with the same emotional and physical drain as we daily try to care and love those who are so very important to us.
Your research is amazing. I’ve had her on a veggie fort in the past and it did not do good things for her so I do indeed limit the type and how much meat she eats. Grass fed (usually our own) and we raise our own meat chickens. I was unaware about eggs- that is very interesting and I have to put that in my radar as eggs have been a breakfast staple (2-3x a week) I may try her 21 days off then and see what happens. Thanks for all the awesome research. I love it, it’s right up my alley.
I am trying a new antioxidant-raising approach, which is infusing the alkaline water with hydrogen. There is a study that shows hydrogen water alone (not ionized) can reduce ROS (reactive oxygen species) levels in the blood by 38%!
Combining that with ionized water seems like it would be even better.
The machine itself is like $150 on eBay, and I tried it 2 days ago. Brain felt less inflamed, and I slept a dream!
@naturallycured Yes, as a matter of fact, we just butchered and processed 12 chickens today. It’s nice being able to grow, feed and raise your own veggies and meat. I’m very fortunate in that aspect. We do eat fish around 2x a week also. I try and get wild caught, but sometimes the budget just isn’t on par. I’m getting ready to put our hydroponics tables up for the winter. I grow lettuces, kale, Swiss chard, broccoli over the winter in our hoop house.
@naturallycured, just a little back story. B was born with intellectual disabilities. Her last IQ was 43. We lived in Fl, in what we came to learn was a very toxic area. The space coast area is full of cancer, the water actually melts things. We moved to Tx 12 years ago and we realized we could really begin a lifestyle above and beyond “healthy eating” from the grocery store. She was born with the cards stacked against her. I still feel strongly that she has some sort of genetic mutation that is screwing up her ability to metabolize properly. Now, is the mental break just an “addition” to the disabilities she already had? IDK, but I know I will do everything our resources will afford us to do to allow her to have the best life possible-even with this dreadful set back we’ve had, 15 weeks ago today. So we will keep plugging away…
If DD is going to drink alkaline water regularly, she’ll need to buffer her stomach acid with some kind of acid during meals. Apple cider vinegar 1 tbsp in 1/4 glass of water, or 1/2 tsp Vitamin C powder in 1/4 glass of water should do it.
Don’t drink too much water during a meal, it makes food harder to digest.
Don’t forget Clozapine as a possible solution, especially if other treatments aren’t working well. There is a growing movement that believes Clozapine should be considered much sooner in treatment options. You can read about other’s experiences with Clozapine under separate threads on the subject.
Some comments as I’ve taken some of the medications mentioned. Both of these can cause dizziness when you first start taking them, I believe it’s from orthostatic hypotension. It tends fade as you titrate up. Hiccups seems a very odd side effect as the old-school typical neuroleptics are often prescribed to prevent hiccups—Haldol particularly.
I recommend looking at the the statistics of side effects on the drug sheets as they list incident statistics from studies. I also think you need to keep an eye to the possibility of drug interactions between supplements you are using and the AP medications. Drug studies generally aren’t done to take these into account and the regulation and administration of supplements aren’t particularly rigorous.
You’re largely in uncharted territory when you get into these and you are taking the burden of doing your own study of one when you go down this road. My psychiatrist has me on a couple of the mainstream supplements, but I think side effects and AP reactions seem so idiosyncratic that unless you find a large enough study you have little more than anecdotal evidence. Bear in mind that the supplement industry has as much profit motive as the drug industry, so pointing to anecdotal evidence is in their interest.
Not to say supplements can’t help, but I’m not sure you can be sure you aren’t working cross purposes before you get stabilized on an AP. My psychiatrist’s approach is to start with an AP only to get a baseline, and then add supplements as he understands what he’s dealing with.
Yes I agree, which is why we are decreasing the CBD significantly. From 1000mg to 300mg. When this first happened she was do wound up that when the olanzapine didn’t do anything except at night (from 3-4 hours to 4-5)we opted to try the CBD to just help her sleep. We knew she couldn’t possibly begin to heal without sleep. At the 300mg she began sleeping between 8-10 hours. We believe this is her "good level’ as the 1000mg calmed her a bit more and helped with agitation but the delusions were still present. That’s why husband and I have decided to try and go through the APs now that she’s resting well and back down to a more reasonable level of CBD. I don’t want to chase down every possibility like chasing after the wind. Thank you for your insightful post. I really appreciate it.