I had a blood test a few weeks ago and they showed really elevated prolactin levels. My levels were 4800 and they're supposed to be around 500 or below. Initially my psychiatrist thought about adding something to reduce prolactin, but after doing some research he phoned me today and said that adding something wasn't likely to bring down the levels enough and he was really concerned about complications. He mentioned a long-term risk of osteoporosis and a more immediate problem of the risk of blood clots being increased.
He said today that staying on the amisulpride is not a viable option, so wants me to come off it and to try aripiprazole again. He's going to start me on 10mg, then go to 15mg, then to 20mg. I'm so, so worried. I'm currently the most well I've ever been. My Mum and employer have both said that I'm the most well they've ever seen me. I've not been this well since things started going wrong back when I was 20 years old.
Aripiprazole made me so agitated when I was on it 7 or so years ago. It increased my anxiety and I was climbing the walls, especially to start with. My psychiatrist is going to prescribe some extra diazepam for me to take if I become agitated. I feel so apprehensive. I'm an anxious person anyway, so I'm terrified this is going to tip me over into extreme anxiety again. What if it doesn't work? I don't know if I would survive another episode.
I spoke to my employer about it today, as I came back from lunch very upset (he called me at lunchtime.) She knows me very well (I've been there for almost five years and have been through a lot in that time), and was saying that I'm a very different person to the person I was 7 years ago, and have lots more skills that I can use to deal with the anxiety and agitation if/when it happens. She also said that she and my other colleagues will keep an eye on me and if they spot things that could indicate things slipping (they pick up on things I hadn't even noticed - apparently I stare into space a lot more, chew my sleeve a lot, touch my chin frequently, am very quiet and distracted and things), they will let me know and maybe contact my Mum if they feel it's appropriate (with my permission.)
I also spoke to Mum and she said that I won't be alone. She said I can stay with her when I'm switching/stepping up the dose, or that she will come and stay with me, or done what she's done before and stay with me until I'm asleep and then go home, and come round again in the morning. She said she could also take some time off of work if she needs to, and that my Nan and sister will be around if I need them. There's also the crisis team and my CC is coming on the 9th, which will be a few days into the switch, so she can check in with me.
So there are things in place, but I'm still terrified. I like being well so much. It's been lovely to have motivation and infrequent invisible people and be able to socialise a bit and not ignore everyone and shut the world out for days at a time. Three months. It was good for three months and now it might end. It's ****.
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
I totally understand your anxiety and I wish you the best on your medication change journey. It does sound like you have a lot of support in place but I know that won't stop whatever biological things are going to happen, hopefully it will at least help you to cope and ride through things until they get to a manageable level. I've had to come off meds because of my prolactin levels too, I know it can feel disappointing but the physical health issues that could come with high prolactin levels would be quite awful and it's probably not worth taking the risk. Keep an eye on things, be honest with people, and have faith in yourself. I really hope things work out ok.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
I'm so scared. Should be starting the cross taper at some point next week. The psychiatrist is prescribing the aripiprazole to start with because the GP won't do it until I've been stable on it for three months, and he said his secretary would ring me next week to tel me when the prescription is ready to pick up. I keep getting huge waves of I CAN'T DO IT. It's horrible. I don't know what to do with myself when I think about what the next few weeks could be like, and that's if the increased anxiety and agitation settles down and it doesn't all go completely to crap. What if I completely lose sight of things and end up dead?
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
Have you mentioned your fears to anyone? I'd hope that there will be enough people looking out for you to notice if things are getting worse and someone can intervene to prevent things from going wrong. It's mostly an unknown journey and that is scary, it's easy to focus on all the things that could be awful. I think you need to ride with it and let the people around you help as much as they can. Your fear will be there, I don't know if there is even anything I can suggest to minimise that, but you can still do this. Your team obviously think this is the best decision, do you trust them?
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
I told my psychiatrist that I was scared I might not survive the switch. He said that he could understand my anxiety, would prescribe some diazepam, and that he was confident that I would be able to be stable on the aripiprazole. To be fair, I think I was on it for a while when I was on it before, and it did turn out OK after the initial time I had with it. I just don't want to go through that initial time again. I do trust my psychiatrist. He is very kind and has never lied to me in the past however many years I have been seeing him. I just really, really don't want to do it. I'm dreading it so much. I cry when I think about it and feel like I can't breathe.
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
I'm sorry this is causing you so much anxiety. When something is happening that I don't want to go through I sometimes find it helpful to remind myself that with every second that passes it is closer to being over with. Can you think of anything that happened the last time and what you might be able to put in place to make it more manageable?
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
I'm new to this site I hope it's ok to post. I really feel for you as I was in a very similar position a few years ago and had to come off amisulpride due to v high prolactin levels. I had exhausted all my antipsychotic options as found they all had bad side effects. I was put on aripiprazole which didn't work and made my anxiety increase tenfold.
But then I was put on Lurasidone. It's a relatively new drug in the UK but is really excellent for me. No increase in prolactin, weight or fatigue and controls my symptoms v well. This medication is not on the formulary but your consultant may agree to try you on it if aripiprazole doesn't agree with you.
I really felt I had to reply to you because I really feel your pain. Please feel free to ask me any q's if you would like. All the best x
Thank you so much, Lindsay. I was in hospital last time I started on it. I'd not long been transferred from a psychiatric high dependency unit to a normal acute ward, and was pretty all over the place. I just remember my anxiety skyrocketing and I could not sit still or sleep. They really wanted me to persevere with it for some reason I cannot remember, so prescribed me diazepam and double the dose of sleeping medication until the period of intense anxiety and agitation had passed. Psychiatrist is going to prescribe me extra of both of those, so I think I'm just going to have to dose myself up until it's manageable.
Thank you, Gemstone. Welcome to the site. Of course it's OK for you to post. :) I did find aripiprazole OK after a while, but still not at good as the amisulpride has been. Being so well is amazing and I'm loathe to give it up, though really have to choice. It's good to hear about your experiences with lurasidone. It's something to ask the psychiatrist about if the aripiprazole sends me of at the deep end.
I don't want to start the new year like this. Psychiatrist was in another base at the end of last week, so couldn't leave me a prescription then, but is going to do it at some point this coming week. It's a really shitty way to begin 2018.
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
I know that this can be so scary. Try to remember that you are not the same person that you were before. I am sure that you have grown and learned skills and ways to help yourself out of a tough time. My advice is to keep in close touch with your psychiatrist so that if you do start to have a hard time, they can make adjustments so that things do not get out of control. Remember to be healthy otherwise: eating, sleeping, exercise. Let us know how you are doing.
I'm going to go swimming, Mum is getting some shopping in for me tomorrow, sleep is sometimes tricky on aripiprazole, but I'm going to really try and I have zopiclone if I need it. It's good advice.
Mum picked up my medication from the mental health centre yesterday, and I'm going to start it tomorrow morning, so that I'm not at work for 5 days and can gauge how it's going to effect me a bit. I'm starting off at 10mg for 7 days. I really, really don't want to take it. I'm so tired of medications and appointment and everything else that having a mental health problem involves.
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
Having mental health problems can feel like such a burden, I understand. It's good that you have managed to take some time off work. I really hope the medication change goes well for you. Keep posting here if you need to and we will do our best to support you.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
Well, I took the first one this morning. Panicked and almost made it come back up again, but didn't. Yuck. I feel so stressed about the whole thing. I just don't want any of it. I do not want to do it. I really don't.
I've had a nice day. Kind of. Mum took me to Lidl to get some shopping this morning, so I've got some healthy food in that's easy to cook. Microwave wholegrain rice, stir fry veg, chicken that you can just shove in the oven and various things. Went out for coffee with a friend in the afternoon. It was nice. I love my friends so much. Hadn't seen her for ages, so it was nice to have a catch up. It's been in the background though, the worry.
I'm feeling really uneasy right now. My stomach is doing flipflops. I think I might be hungry though, so am going to shove some dinner on and get into my pyjamas. Hopefully once I've eaten, taken evening medication and feel nice and comfy, I'll be less unsettled.
What a pile of crap.
Thanks Lindsay. I really appreciate your support on this one.
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
You're welcome, if you need to talk and I'm online feel free to PM me if you want. I can imagine how anxiety provoking this must be for you. Well done with taking the first dose, keep staying busy with things you enjoy if you're able to. I know it doesn't fully take away the worry etc but it's better to have a bit of distraction than none at all.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
Thank you. :) You're right; it is better to have a bit of distraction than none at all.
I bought an electric piano from Amazon in the Christmas sales, and it arrived the other day. I'm going to see if my Mum will help me to put it together tomorrow. I used to play the keyboard a bit when I was younger, so am looking forward to having a dabble with the piano when it's all set up - I find music very absorbing, so am hoping that it'll act as a good way of taking my mind off of things.
It took me over an hour to move myself off of my bed and make dinner after I last posted in this thread. I did it though, and it was really nice. I don't know why it took me an hour. I just felt anxious and I was scared if I moved it would make me feel worse. I don't think it's the medication making me anxious, as I've only taken one dose - I think I'm just so, so worried about what's going to happen in the next week or so as it gets into my system a bit.
I'm going to have a cup of decaff tea and go to bed, I think.
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
Did you manage to sleep ok? How are you today? It's very understandable that you are anxious and it is making itself known, it's hard to focus on other things when you're anxious and I think you're doing really well with all the things you're trying. I know it's difficult but if you are able to then try and stay in the here and now rather than worrying so much about what may or may not happen in the next while. You can only deal with what is happening at the moment not what has yet to happen as you don't know for sure what that will be. I do get that it is very hard not to worry though. Look after yourself.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
Sleep was pretty awful. I didn't sleep until the early hours, and when I did finally drop off then I had terrible dreams. Being up late was my own fault, because I wasn't even in bed before midnight. I was worried about having to get up in the morning and take the aripiprazole, so I just resisted sleep for as long as possible. I'm going to be in bed with the computer off by 11:30pm tonight in the hope that I sleep at a reasonable time. I don't have to be up in the morning so am not going to set my alarm.
I feel awful right now. I can't settle. I'm getting myself into such a flap. :(
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
Is there anything that you can really, really focus on and get immersed in that is enjoyable and diverts your thoughts? Or do you want to talk about how you're feeling? I think a lot of this will just be about trying to find ways to bear your anxiety and keep going. I hope you can have a better sleep tonight.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
I think talking about how I'm feeling will just be me repeating myself for the millionth time. I'm not really feeling much other than anxiety, either. It's boring. I might play the piano for a bit. I'm waiting for a seat to come, but I could sit at my table and play. This place is good company, too. If it gets really bad I can call my Mum and she'll come over. I don't think I need that right now though.
I think you're exactly right when you say that a lot of this will just be finding ways to bear my anxiety and keep going. I really, really need to sleep tonight. I think I'll try some sleeping medication. I don't like to use it, but not sleeping properly is going to make things so much worse.
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
I did sleep, yeah. It was a bit of a nightmare of an evening. Had a massive panic about all of this and ended up texting Mum and a good friend, calling the crisis team, taking diazepam and then zopiclone (prescribed doses).
Today has been OK, but I still feel so, so anxious. I'm getting physical pains, shortness of breath, an inability to just sit still, and water tastes like deodorant. There's nothing physically wrong and I don't think it's the new medication. I'm pretty sure that it's just anxiety playing havoc, but it doesn't make it easy.
I know that it's just a case of riding it out, and that it will get better, but oh my this is such hard work. :(
“Our defeats are softened and our victories are sweetened because we did it together.” - Toby Ziegler.
