I am very sensitive to medication changes. I have tried about 30 mood stabilizers/antipsychotics/antiseizure meds to control my bipolar disorder. Most of them gave me horrible side effects. I’ve been on prolixin (a very very old school antipsychotic) as my main antipsychotic for about 5 years now. The only side effects it gives me are that I sleep a lot (14 hrs a day minimum is required), and I have shaking in my thumb and involuntary chewing motions.
I’ve been thinking for the past 5 years that I’m pretty stable. But recently due to a new homework assignment from my therapist I’m realizing all the times I’m down or up or anxious every week. I’m down about once or twice a week. I am anxious every day of the week pretty much. I am up about once or twice a month.
In the past, I’ve fought with my psychiatrist about trying new medications– he doesn’t like me on the prolixin due to the risks of tardive dyskinesia (the thumb shaking and chewing motions). So I decided today that I would tell him I was ready to try something else.
Surprisingly, my psychiatrist and nurse practitioner agreed that I should not change my meds at all. They said I am pretty stable, and they don’t want to risk making a small change which might lead to big results. I was really surprised to hear that.
On the one hand, it’s great that I’m considered pretty stable. On the other hand, it sucks that “stable” for me involves so many mood swings and such anxiety. It is really disillusioning to think that this might be the best I’m ever doing, and it is still at a level where I cannot work or do a lot outside the home. I’m not really sure how I feel about not changing my meds.
Yesterday I got a free sample at Starbucks that included caffeine and sugar, both of which are no-nos for me. Ever since I’ve been a bit up. I think that might have had something to do with the psychiatrists thinking I’m OK. Brad says I was talking really loudly. My mood self-assessment wasn’t super bad, it was probably a 7 out of 10 during the appointment (0 being maximally depressed, 10 being totally, psychotically manic). Due to disappointment about not changing meds, that’s come down a bit, so I am at a 6. 6 is safe.
Brad was very worried that I started re-reading Twilight again, which has in the past led to a lot of psychosis. I don’t think I’m in danger of that right now, but as a favor to Brad, I won’t read any more Twilight today.
For the rest of the day today, I am going to take it easy. Brad says I’m not allowed to clean (cleaning up is often a trigger for mania for me) so my friends coming over tomorrow will have to deal with a dirty house. Luckily they understand! Just staying stable is the goal.
“Staying stable is the goal.” That is usually indeed our attempt – to stay stable. But at what cost? That tardive dyskinesia can really eff you up – and it’s my personal belief that it gets progressively worse, and you can’t get rid of those side effects. It is dangerous. I’m pretty weirded out that your PDoc thinks that trade-off is OK for you. I’m sure you’ve researched the med and its side effects. In this day and age, their are plenty of meds to accomplish your goal without the dangerous side effects – so that’s why I disagree that your PDoc wants you to stay on it. This is just my personal feeling. And quite frankly, it makes me worried for you. I wish your PDoc would explore other meds: yes, it’s a pain in the butt to start a new med and then wait weeks to see if it works, but surely something else is available without tardive dyskinesia as a side effect. That’s a nasty side effect and if I remember rightly, it is irreversible. But it’s hard to change meds – and I don’t see this med as helpful more than destructive.
I’m a Sagittarian, so I lack tact in saying what I believe. The Docs know better than we do, and we have to trust them in them…
Thanks Deb! For me, TD (tardive dyskinesia) is an OK side effect for me being stable and not gaining weight. I have tried almost every single antipsychotic out there– except for the really old school ones like Prolixin. Thank you for caring so much about me! My psychiatrist isn’t my favorite person either, but I will spend the time before my next appointment doing some research to see what drug I think I would like to try next.
Veronica,
Your 10 hours a day of being awake must be very important to you. So I just wanted to say “Thanks” for sharing your time with me! What can you do to relax for the rest of the day?
CJ O’Lenick, PhD
Ps still no word from the LinkedIn guy.
Dr. CJ, I always enjoy sharing my time with you! I am going to watch the news, and then silly TV shows that I’ve already seen before to keep me rooted here at a 6 for tonight.
Let me know about the LInkedIn guy!
“Staying stable is the goal.” That is usually indeed our attempt – to stay stable. But at what cost? That tardive dyskinesia can really eff you up – and it’s my personal belief that it gets progressively worse, and you can’t get rid of those side effects; They stay with you forever. I think it is dangerous. I’m pretty weirded out that your PDoc thinks that trade-off is OK for you.
I’m sure you’ve researched the med and its side effects. In this day and age, there are plenty of meds to accomplish your goal without the dangerous side effects – so that’s why I disagree that your PDoc wants you to stay on it. This is just my personal feeling. And quite frankly, it makes me worried for you. I wish your PDoc would explore other meds: yes, it’s a pain in the butt to start a new med and then wait weeks to see if it works, but surely something else is available without tardive dyskinesia as a side effect. That’s a nasty side effect and if I remember rightly, it is irreversible. But it’s hard to change meds – and I don’t see this med as helpful more than destructive.
I’m a Sagittarian, so I lack tact in saying what I believe. The Docs know better than we do, and we have to trust them in them…
whatever it takes, Dr V! I hear you about the disappointment/disillusionment and you are not alone…most of us with chronic illness/MI hit this at some point. I try to keep it in today…as in this is the best I am going to be today, no expectations, no attachment. Would I like it to be different or some other outcome? Sure. Can I make that happen? More than likely not. I CAN use whatever tools I have that keep me safe and as stable as possible to ensure I do have the best day I can 😉
<3 <3
Thanks Kyrie! I wasn’t expecting the appointment today to end in disappointment and disillusionment. But I will focus on stability as my goal.