Struggling for the last 12 days

[anon39736208]

Just want to vent a little bit.

I have been on Invega 12 mg since early April. It was working very well for me, but my prolactin was high, so we had to recently reduce it to 9 mg.

It took me 5 days to go psychotic again, and another 5 to get the full insight that it was happening, not just my husband reporting odd symptoms again.

I have been back up on 12 mg since Thursday (today is Monday). My psych nurse said I should be much better by Saturday afternoon. I usually respond very quickly to med changes.

Nope. I am still just as bad. I am terrified that I will be one of those people who can’t get the same result again on a med once they go down. And I can’t stay on Invega 12 long term anyway, because of the prolactin. We only went back to 12 to rescue me until we can make other plans.

I have had insomnia for the last six nights. I have been up no later than 3:30 with voices and racing thoughts overlapping one another, and can’t quiet down. I am tired but wired.

I am so spent. We are introducing Trilafon to take the place of either part or eventually all of my Invega, depending on how I do on it. I use a local mail order pharmacy and don’t drive, so I won’t start it until tonight even though the prescription was sent on Thursday. Even so, it’s a low dose, intended to make sure I tolerate it before we increase, so it won’t immediately help. Invega is my 5th AP I’ve been on, and Trilafon will make 6. I’ve been trying to find the right med and dose for years now.

I only leave the house on Saturdays, for about an hour. I had a breakdown at Walmart this weekend, hallucinating that the walls and ceiling kept getting smaller and bigger again, with the intention of squashing me to death. And voices. Always voices. Thank God my husband was there to help me get out of it. I never leave the house unaccompanied anymore, and besides, I don’t drive anymore. I can’t do it safely so I stopped in July. I am hallucinating bugs and smells too.

I feel so freaking hopeless. And exhaustedly tired.

Sorry so long. It’s been brewing for nearly two weeks and I am frustrated it is just as bad as when it started…it feels like it will never balance out again and I don’t know what to do…I already see my psych nurse weekly, and I love her. But only been seeing her since January, so we’re both still learning what to do for me.

[everhopeful]

Maybe give the invega 12 a few nore days?

Have you spoken to your doctor about adding low dose Abilify to invega 12 to bring down the prolactin?

[anon39736208]

I can’t. We know that’s an option but I was on it for nearly a year, and it gave me horrible anxiety and I gained nearly 100 pounds. Rexulti is out too for that reason, since it’s related. I was taking Klonopin twice a day with no effect. I always told my pdoc at the time that it made no sense to give me a drug I could get addicted to, when we could eliminate the problem and switch from Abilify. It took him a year of hell to listen. Good idea though.

I had the Genesight test done in March, so we’re picking meds based on what that said I would respond to. I’ve been on Haldol, Geodon, Abilify, Zyprexa, and now Invega. Trilafon will make #6. Denise said she has several patients on it, and a lot of good experience, plus Genesight said it’s on my recommended list.

I guess I just need to be more patient. But it’s so hard.

[Quehead]

man. i was struggling for one day and i couldn’t take it anymore. kept thinking about all these memories i had but beside that i felt totally incompetent and sleep deprived. ugh. decided to quit smoking out of it due to my neighbors driving me crazy and feeling not great about being outside in the open every 45 minutes. i didn’t actually say anything crazy though that’s a good thing.

[Mr_Hope]

Have you tried taking vitamins and minerals as a add on theraphy? In a bloodtest taken at your doctor you will only be informed if you are critically low on nutrients, while suboptimal levels are not adressed.

Especially lack of B and D vitamins are linked to mental illness.

[anon39736208]

Because of my prolactin, I have been supplementing B6, D, E, and zinc, all of which lower prolactin.

I also take B12. Every time I try to take a B Complex vitamin, I want to throw up. I’m not sure which one I don’t tolerate well, but B6 and B12 are fine, so I keep taking those.

Thanks for the replies @Mr_Hope. @Quehead and @everhopeful !

[Joker]

Wishing you a speedy recovery @anon39736208

Hope the introduction of the new medication helps you

[pasteyface]

Jeeze. Im sorry you are having a rough time. Hopefully the medicine starts working again. Sometimes you just have to deal with the side effects if it is working to keep you sane.

[Wave]

Oh I’m sorry @anon39736208
Hang in there