For me, today is the first day on a new antipsychotic. It’s a sucky day. Even though I swapped out an antipsychotic and even though I started on the lowest dose possible, this antipsychotic is wrecking havoc with my day. I wish this wasn’t so predictable, but it is. For me, it’s just a fact that the first day on a new antipsychotic is terrible.
Why Start a New Antipsychotic?
Of course, there are many reasons why people start new medications, including antipsychotics. The last one might not have worked, they may need to augment their current medication(s), the may be trying to lessen side effects and so on. For me, I started this new antipsychotic to try to augment my current cocktail (lessen the depression) as well as fight the side effect of anxiety.
What’s the First Day on a New Antipsychotic Like?
My friend was kind enough to text me this morning to tell me that she hoped I would see changes after taking this new medication today. Changes? Yes. Positive changes? No.
I’ve taken pretty much every second-generation (atypical) antipsychotic there is so I have a lot of experience with this. For me, the first day on a new antipsychotic is almost always tired, fatigued, foggy, confused, woozy, dizzy, lethargic, headache-y and pretty much nonproductive. All I want to do is sleep and if you look at my fitbit, you’ll see very few steps indeed. And that’s not counting the effects that antipsychotics have had on me that have been significantly worse than that.
Even though it’s this tiny pill with a tiny bit of medication in it, it still seems to affect my brain in very big ways.
Anticipating the First Day on a New Antipsychotic
Now I know some of you are thinking: Aren’t you just exaggerating? After all, in the television commercials, everyone walks hand-in-hand in the sun after taking a psychiatric medication.
Life is not a television commercial.
Life, most especially, is not a drug television commercial.
And yes, after having antipsychotic experience after antipsychotic experience it is possible to be expecting terribleness to the point where terribleness is inevitable. I guess. But I swear to god, spend some time in my body and you’d be hard-pressed to believe that I am exaggerating one bit. But that’s me.
First Day on a New Antipsychotic, Last Day on a New Antipsychotic
Depending on how bad the side effects are from the new antipsychotic, it can scare people off the medication altogether. (Sometimes just the thought of it does.) I really can’t say as I blame them. Feeling terrible from the thing that is supposed to make you feel better is wretched. This is one of the reasons medication noncompliance (nonadherence, if you like) is such a big issue.
But things get better. Yup, the first day on a new antipsychotic is almost always terrible, but day 10 may not be and even if it is, day 20 may not be.
Now, humans aren’t really good with long-term anything. We want the now and tend to forget about the later. But antipsychotics are all about the later, and we, as patients, have to remember that. Doctors aren’t very good at stressing this so we have to be. We have to be able to talk ourselves through the terrible days on medication in the hopes that later days will be better. And we have to remember that it’s not just going to be the first day that is terrible. It is likely to be many days that are terrible before our bodies adjust to the new drug. That’s just an unfair fact of life.
And that’s a lot to talk ourselves through, I know.
But that’s what I’m doing and I hope it’s what other people can do too because these medications save lives and save quality-of-lives every day. But we have to be willing to go through all the terribleness to find the one and the dose that will actually work for us.
Dee29 I agree with everything that you wrote. The other frustration I have is every time I ask a doctor what else can I do in addition to taking my medication I always get the same response, a short lecture on the importance of being compliant with my medication. Even when I point out that I said “in addition to my medication” they still refuse to answer my question. One of the most important lessons that I had to learn the hard way was how important sleep is to managing my illness. It wasn’t until my third 72 hour hold to I happen to stumble on an article that stresses the importance of sleep and list the reasons why. I was so angry! Why didn’t any of the half a dozen doctors that I saw share that information with me? Out of everything that I have since learned about managing this illness the importance of sleep has been at the top of the list. It terrifies me think about how many manic episodes I would have had if I hadn’t stumbled across that article? Everything that I have learned on how to best manage this is I learned on my own. This has to change! Doctors have to learn that we look to them for guidance, for education, we want and deserve more than just getting handed a prescription to fill.
Hi Natasha, You are so right when you say the first days of taking a new psychiatric drug are a downer. I have been prescribed many drugs over the last 42 years being involved with psychiatry but have experienced worse things withdrawing off them cold turkey.
I wish you well with your new medication and I for one am a good advertisement of medication working. I am sound on my old fashioned Haldol Injections. I too have bi polar but am diagnosed with schizophrenia as well so have schizo affective disorder and have a bit of both.
I hope you take the time to bother to read my new blog?
I love your new book and my MHT workers have looked at it and say how down to earth it is and practical.
regards
Anne
ps I wrote a book Virginia Art which you might find interesting?
I for certainly HOPE that your new medication will have positive effect in the long run!
I know Latuda works for many and I am thrilled for them. Within an hour of my first dose a voice ( my own) was demanding that I kill myself. I immediately called my doctor because I never heard voices or was suicidal. She told me that I was her only patient who had that experience so obviously it was me and not a side effect. And then she doubled my dose. Thank God I had enough common sense to tell her to fuck off. If possible please let a trustworthy person know you are starting a new medication. Also I have never started more than one medication at a time. I don’t give a flying fuck if that is typically what a doctor does. It is hard enough to evaluate one new medication and next to impossible to try to evaluate several at a time. I completely understand that we are all different. I am on one medication. If your doctor insists on you starting several at once either switch doctor or go inpatient for your own safety. Prayers and positive thoughts to you all.
Tracy, I am the same way, I have no trouble telling a doctor to go to hell if I know they are being irresponsible. I’ve had the experience of the doctor doubling the dose of the antipsychotic that was causing severe akathisia, causing me to go inpatient in the hospital, where they raised it even MORE and I became so restless I wanted to die….also have had a doctor blame me because no one had ever had the same side effect. I have gotten suicidal on Topamax. I had no clue what was going on until I remembered I had started it two weeks earlier, and quit it. The suicidal thoughts went away. I will quit drugs my way, too. No abrupt discontinuation. I don’t give a flying fuck either….the doctor will do things MY way…one med at a time, smallest possible dose to begin with, or I will be finding a new doctor. Too many people let doctors use them as guinea pigs and doormats. People need to remember…we hire THEM, not the other way around! I have fired 7 or 8 doctors before finding one that isn’t utterly irresponsible with how they dole out meds, and who doesn’t tell me the side effects are in my head.
I am praying for you that this new medication works for you. And logically I agree with you that for some of us we are constantly trying a new medication. Speaking for myself today I am off the medication roller coaster for the time being. I am sticking with the devil I know. Xoxo
Definitely starting any new medication is rough,particularly anti-psychotics.
I get cotton mouth,dizziness,headaches,drowsiness, stiffness in my muscles.
Do you experience some of those as well,Natasha?
I’m sad for you & all us BPs it’s such rough going to get stabilized…
No wonder there’s such a high rate of high non compliance.
Can you blame someone for stopping a drug that’s making them that
Uncomfortable? Even if others say oh be patient it’ll get better”
We’re not known for our patience skills!
The only way it helped me ( respect not everyone can do this)
Was to take it only @ bedtime,before was 2xd
Plus with a benzodiazepine. I’m not an addict,so as I said not everyone
Is able to do this.
Helps with a lot of the side effects,really
Imagine marijuana would same.
( I’m an advocate,though due to my meds mix don’t smoke)
Anyway,I do believe APs are of great use in the treatment of BP.
I hope things improve for you right away.
The worst experience I’ve ever had was with – I think it might have been Latuda. At this point I can’t remember all of them. About an hour after taking the first dose I started twitching. My muscles refused to relax. At ALL. It was the longest day I can remember aside from waiting to find out whether my mother had passed, and that was a very long day indeed. That was both the first and last dose of that particular med I have taken / will ever take.
Funny how so many of us have had the “it works until it doesn’t anymore” issue with Seroquel. I am currently waiting for a tiny dose of what my psych doc calls the “reset button” to kick in because it’s been weeks of not early enough sleep (and that usually commencing at 3 am or so) with my usual tiny Seroquel dose. I suspect I’ll be asleep soon.
Some day we’re all going to find the perfect mix. I just know it.
In the meantime, all of the very best wishes to you. Your posts help more than you could imagine.
Hey Kay, I’m like many; I’ve been on so many atypicals that I have to go to Wikipedia to remember all of their names! But Latuda was the worst for me too. Sad thing was, it had been working just fine with no side effects for months, when one day suddenly I was *not* feeling well. By three days later my wife wanted me to go to the Emergency department; so I just stopped taking it and was better within a day or two. I’m also recently back on Seroquel, after a decade-long hiatus; we’ll see whether that works this time – I’m so much running out of options that my p-doc has put me on Rexulti samples (not for sale here yet) just because I’d never tried it so far!.
after almost 3 years of various doses of seroquel and topiramate I’ve started having side effects like heart palpitations and increased anxiety, and also the increased dose of seroquel in the pill form almost makes me pass out! even though I take the same amount in the smaller dosage pills and I’m fine! So even though I’m very scared I’m going to address the issue of maybe a medicine change but I’m really scared :(((
Hi Gasponce,
It’s normal to be scared. Being scared is your body’s way of keeping you safe. That’s actually a good thing.
Of course, we can’t be a slave to our fears so it’s really good that you’re going to address the issue. That is important.
– Natasha Tracy
Natasha, I am so sorry that you are having a tough time. Changing medications can be so difficult. Good for you for waiting it out as I tend to write a medication off too quickly. I hope that you get some relief soon. Hang in there
It is certainly the case that different medications affect us in different ways, and I have also clearly experienced what you wrote about waiting some medications out. I’ve been very glad that I’ve been patient with some (not all) medications, even some that seemed HORRIBLE in the early days.
Focusing only on antipsychotics, I’ve had various experiences. I’ve had great experiences with some antipsychotics in the beginning that turned bad later down the road. I’ve had some that were immediately rough, but eased after some time, especially those that initially caused extreme sedation/sleepiness. Really, I’ve taken a couple sedating APs that after some time weren’t even sedating enough. Some gave me symptoms, like akathisia, that just weren’t going to stop no matter what. Sometimes a side effect easing med makes them bearable, but sometimes they don’t. Life may have seemed beautiful on a particular AP mood-wise in the beginning, but when the weight packed on beyond my control, it was hard to like anymore. Or there were scarier things that cropped up.
I’ll mention by name just one antipsychotic that has turned out to be extremely valuable to me. Seroquel XR. Boy, did Seroquel XR make me hungover in the mornings (sometimes even into afternoons) for a long while, even at somewhat low doses like 150 mg. But I held on and tolerated it. I tried all kinds of strategies to ease that side effect. Eventually, I did adapt to it and I found a way to prevent the “hangover”. Now I sleep a lovely 7-9 hours per night and wake up refreshed. Compared to all other antipsychotics, Seroquel XR gives me the fewest and most minor side effects of them all. At my current dose, I was able to eventually go off two other antipsychotics (I was taking three at the same time at one point, along with two to three moodstabilizers, etc.). Though occasionally my dose has to go up a bit to squash breakthrough mania, it eventually goes down again. It’s slightly weight unfriendly above 500 mg for me, but at 500 mg or below, it’s weight neutral. Not everyone can say that about this medication, but I can. Again, this antipsychotic is the friendliest of them all to me, and is the only one of my medications that my psychiatrist needs to manipulate when I have breakthrough ups and downs.
I switched to seroquel about a year ago. At first it would hit me in 10 to 20 minutes and knock me out cold to the point where I actually had to take it in bed or otherwise I would be so out of it that walking and I didn’t wasn’t safe.
However, I developed a decent relationship with the drug and would sleep beautifully.
Now, I don’t even get drowsy and can’t sleep far to often.
My question to you is that if you’ve had a similar experience. Also, I know that many people who take seroquel gain weight which is a side effect I’m sure you know. I’ve always been thin growing up. I gained about 15 pounds since which sucks. Have you been subject to this particular side effect?
Lastly, (I apologize for asking so many things), I had to go to the hospital because it made me hallucinate awful things and extremely vivid that I freaked out.
I still get some, they’re so minor it’s not unmanageable. Has that ever happened to you?
Thanks and I enjoyed reading your comment.