[Miss Laura]

Hey guys,

I'm having second thoughts about being on medication. I have been diagnosed 11 years but I'm non compliant in taking meds. I have managed 1 year and 14 days on meds and now I have stopped oral medication for about a month maybe longer. I take orally Depakote and 2 high blood pressure meds but stopped them all. I also get a monthly depot injection of Aririprazole. I received this on Thursday but I resented it and felt angry for getting it. But I called my Community Psychiatric Nurse and she said get it this month and when I see her on this Wednesday coming we will discuss it.

Yes I admit I was having severe symptoms but they have passed and I'm fine no issues now.

I know you will all say keep on them and re-start the ones I have stopped but I'm so done with taking them. I think I can control it all better without them.

I'm kinda just looking for any advice you can suggest to me to help me get a clearer picture

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[Soupe du jour]

Miss Laura, I wish you well no matter what you choose. If you're extremely lucky, maybe you'll manage for a while. If hell breaks loose, which it might, you will hopefully learn from it. Do beware, though, that quitting meds can be a form of Russian Roulette. Some get very hurt or even worse.

As you only recently lost your mother and may not be processing grief in a healthy way, I do fear for you, greatly. My hope is that you WILL take the suggestions of your mental health care professionals. It's my guess that your late mum would want that, too.

[*Beth*]

Soupe has articulated her thoughts so well; I agree with her.

[Crazy Hitch]

I was diagnosed 14 years ago. Got sick of being on meds after 4 years. I was doing really really well. So I stopped taking them. I was fine for 2 years off them. Then I went hypo for a month leading in to full blown psychosis changing my diagnosis from BP1 to BP2 in the blink of an eye. I landed up in a psych ward faster than you can say Jeronimo.

First last and only time I’ve ever been in a psych ward. When I was unmediated and thought I was doing great.

I can’t say if you should / shouldn’t be on meds but you need to be VERY careful because whilst you may read my post and think to yourself yeah but I’ll never go psychotic or I’ll never land up in a psych ward - I NEVER thought I would either. Until it happened to me.

[sarahsweets]

I don’t know if you take Latuda or would take it if your doctor prescribed it they just came out with an injectable form that she get once a month in your doctors office. I so understand not wanting to be on medication and I understand feeling like you can’t control the urge to just trash them all. The thing is you know what is going to happen. I’m sorry about your mom but do you have another family member or friend that could help you out with taking the medicine?

[Miss Laura]

Taking medication is an on going battle with me. As I say I have been fighting with it for 11 years nearly 12. To me I'm not in control when taking the meds. I need to be in control. I feel they all want to poison me making me take them and get the injection. The injection was sprung on me as they my Community Psychiatric Nurse and Psychiatrist thought best to do this as I was freaking about getting it.

My Sister is the only one I talk to and even that isn't great as she doesn't understand and gets annoyed at me. She's too busy anyways lately with her new role at work.

I do get psychosis and have been experiencing some little bouts of it but I can handle them. My anxiety is through the roof though. Need to just relax huh

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[Soupe du jour]

No one "can handle" psychosis, Miss Laura. No one! Sorry to break it to you. Any delusion that you can is just that...a delusion. When delusional, you are not in control. The illness is.

[Sometimes psychotic]

So I’ve had a trial of meds that was psychiatrist sanctioned….I was off nine months then my psychosis started reappearing. Check out the wunderink studies. They deal with psychosis and most people relapse in both treated and untreated groups but net outcomes are better for those taken off meds. Caveat is I’ve never seen anything similar for bipolar….once you’re diagnosed with a chronic condition the usual rule is that medication is helpful.

I know for me I can trace my condition to a faulty GRM3 gene which causes splicing of the cytoplasmic tail of the metabotropic glutamate receptor. Now that’s not something I have any control over, but the medicine can help with the bad signaling that happens because of that.

For me I stay on meds because I know my psychosis can be dangerous but given that the medications are not perfect I’m considering a reduction again. In my case I have developed metabolic syndrome including pre diabetes after ten years on the meds. Admittedly I gave up fighting the hunger every day and let myself get fat. I will be trying diet first prior to psych med reduction.

In the past in order to successfully get off meds I was told to wait for six months of stability and then taper off slowly. A quick withdrawal from APs can actually induce psychosis even in healthy individuals. So don’t quit cold turkey no matter what.

What is it that makes you feel not in control…is it taking any meds? Would you consider a low dose to take the edge off of symptoms.

Recovery in Remitted First-Episode Psychosis at 7 Years of Follow-up of an Early Dose Reduction/Discontinuation or Maintenance Treatment Strategy: Long-term Follow-up of a 2-Year Randomized Clinical Trial | Clinical Pharmacy and Pharmacology | JAMA Psychiatry | JAMA Network

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[Miss Laura]

Originally Posted by Sometimes psychotic

So I’ve had a trial of meds that was psychiatrist sanctioned….I was off nine months then my psychosis started reappearing. Check out the wunderink studies. They deal with psychosis and most people relapse in both treated and untreated groups but net outcomes are better for those taken off meds. Caveat is I’ve never seen anything similar for bipolar….once you’re diagnosed with a chronic condition the usual rule is that medication is helpful.

I know for me I can trace my condition to a faulty GRM3 gene which causes splicing of the cytoplasmic tail of the metabotropic glutamate receptor. Now that’s not something I have any control over, but the medicine can help with the bad signaling that happens because of that.

For me I stay on meds because I know my psychosis can be dangerous but given that the medications are not perfect I’m considering a reduction again. In my case I have developed metabolic syndrome including pre diabetes after ten years on the meds. Admittedly I gave up fighting the hunger every day and let myself get fat. I will be trying diet first prior to psych med reduction.

In the past in order to successfully get off meds I was told to wait for six months of stability and then taper off slowly. A quick withdrawal from APs can actually induce psychosis even in healthy individuals. So don’t quit cold turkey no matter what.

What is it that makes you feel not in control…is it taking any meds? Would you consider a low dose to take the edge off of symptoms.

Recovery in Remitted First-Episode Psychosis at 7 Years of Follow-up of an Early Dose Reduction/Discontinuation or Maintenance Treatment Strategy: Long-term Follow-up of a 2-Year Randomized Clinical Trial | Clinical Pharmacy and Pharmacology | JAMA Psychiatry | JAMA Network

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Thanks,

I just hate taking any type of med. More so for my head. I feel dumb down, slow, no fun anymore. Taking meds for "bipolar" has took the fun out of me. I'm just your average Joe Bloggs off the street if medicated. I don't take any medication for headaches or muscle aches or cramps or anything physical. So taking meds is a big thing for me. I need to feel in control amd I currently don't I feel they are all in control of me and they will make me take the meds. I'm dithering about telling my professionals I'm off meds as I just know they are gonna make me take them

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[Sometimes psychotic]

Originally Posted by Miss Laura

Thanks,

I just hate taking any type of med. More so for my head. I feel dumb down, slow, no fun anymore. Taking meds for "bipolar" has took the fun out of me. I'm just your average Joe Bloggs off the street if medicated. I don't take any medication for headaches or muscle aches or cramps or anything physical. So taking meds is a big thing for me. I need to feel in control amd I currently don't I feel they are all in control of me and they will make me take the meds. I'm dithering about telling my professionals I'm off meds as I just know they are gonna make me take them

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Are you on any sort of community treatment order or are you just worried that your professionals will drop you if you’re not on meds. I know my pdoc is pretty much for med management only and would drop me if I were entirely off meds.

I’m not sure where you’re located but cbt can minimize some symptoms, but I’ll warn you if meds are 90% cbt is like 10%. There are some countries where medicine is a last resort…Called open dialogue in Lapland Finland….you might want to look into the process Open Dialogue – International Mental Health Collaborating Network

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[Miss Laura]

No, no Community order. Just think they will make me stay on them. I'm resenting them more snd more each day.

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[Miss Laura]

I'm really angry about taking meds, taking the injection, having the diagnosis, my life being tamed

I just want to live a proper life without being dumbed down. I feel the life has been sucked out of me

I'm seeing my Community Psychiatric Nurse tomorrow (Wednesday) and I'm speaking to my therapist too. Normally this never happens but my CPN is leaving (retiring) in April and she had to cancel my last appt due to having covid. So I'm trying to cram as much time with her as much as I can.

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[Sometimes psychotic]

Originally Posted by Miss Laura

No, no Community order. Just think they will make me stay on them. I'm resenting them more snd more each day.

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In that case it’s entirely your decision. Some people will keep a PRN antipsychotic to use as needed because it’s hard to get back in if you discontinue care. I recommend being transparent and explain exactly what you’re feeling. I’m sure we can all relate on some level but most of us have our reasons for staying on meds. For me I’m always afraid my psychosis would lead to some irreversible error that I’d be responsible for legally.

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[Miss Laura]

I couldn't tell my CPN I was off my meds. But I think she knows. I had sp much to say to her but I left my notes in the house. I forgot half of them. She is retiring and my last session is mid Feb with her. I'm gutted. Not gonna lie I was nearly in tears. She says to stick with the meds and injection. She was saying she has seen me off meds and meds is where I should be with. She says the length of time to get stable on meds is long since I yo-yo on off them.

I'm in such a dilemma I just don't know what to do. I wish I could just decide what I want to do and I guess take them

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[*Beth*]

Originally Posted by Miss Laura

I couldn't tell my CPN I was off my meds. But I think she knows. I had sp much to say to her but I left my notes in the house. I forgot half of them. She is retiring and my last session is mid Feb with her. I'm gutted. Not gonna lie I was nearly in tears. She says to stick with the meds and injection. She was saying she has seen me off meds and meds is where I should be with. She says the length of time to get stable on meds is long since I yo-yo on off them.

I'm in such a dilemma I just don't know what to do. I wish I could just decide what I want to do and I guess take them

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My dear...take your meds. It's not worth the expenditure of energy to be off them.

[Sometimes psychotic]

Originally Posted by Miss Laura

I couldn't tell my CPN I was off my meds. But I think she knows. I had sp much to say to her but I left my notes in the house. I forgot half of them. She is retiring and my last session is mid Feb with her. I'm gutted. Not gonna lie I was nearly in tears. She says to stick with the meds and injection. She was saying she has seen me off meds and meds is where I should be with. She says the length of time to get stable on meds is long since I yo-yo on off them.

I'm in such a dilemma I just don't know what to do. I wish I could just decide what I want to do and I guess take them

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Personally I’d take them….an outside perspective is invaluable….often with bipolar and especially psychosis we lose touch with reality enough that we think we’re fine or perhaps more than fine when we aren’t to everybody else. I’m sorry you’re losing your CPN next month. Constantly cycling mental health professionals is just one of those things that happens in the system we have.

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[MuddyBoots]

Would re-reading some of your posts here from when you were off meds help you make the decision of whether to stay on or off of them? just a thought. Hope you make the right call for yourself.

[Miss Laura]

I don't like re-reading my posts I find them utterly rubbish if I'm honest. I don't think I'm in psychosis. I seem to have a handle on reality and what is and isn't acceptable. I'm rationed enough as I understand the implications of not taking the meds.

I'm just really indecisive this is my biggest problem. I just can't decide what to do for the best my head is telling me one thing but my heart is saying another. My head is over ruling me unfortunately

I know meds are best I just resent them and taking them is making me sick cause deep down I know they aren't for me. I did ask my CPN re life with no meds and she said it is possible but it's all the alternative therapies I would need which would cost me a bomb. I wouldn't get it on the NHS so I would need to pay for it myself which I don't have that kind of money.

I'm arguing the diagnosis again. She says ask my Psychiatrist. I always feel they are holding back on what's wrong with me. I just don't see bipolar in me. I've been reading a book on bipolar and I don't see myself in bipolar 1 (my apparent diagnosis). I speak to my Psychiatrist on the 8th Feb. But I know what he will say you do have bipolar 1.... but why can't I see it?

Bipolar makes me angry as I lost everything with this diagnosis. I just don't know who I am anymore

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[Soupe du jour]

Miss Laura, sometimes when people post topics like this (where they want to go off their meds), it is predictable that no matter what anyone says, they intend to keep the same attitude. This seems to be the case here. What do you want from us then? What is your intention here? Just to get attention? You're sure as heck not convincing me to get off my meds.

[Miss Laura]

Thanks for that post no I am not attention seeking but gee thanks for making me feel wanted. I'm venting and if you didn't have nice things or non judgemental things to sat you shouldn't have posted. Think what you like of me your just another person on here to me

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[Soupe du jour]

Originally Posted by Miss Laura

Thanks for that post no I am not attention seeking but gee thanks for making me feel wanted. I'm venting and if you didn't have nice things or non judgemental things to sat you shouldn't have posted. Think what you like of me your just another person on here to me

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Miss Laura. You are wanted here. I never meant otherwise. I just don't understand what else I'd say to you about staying or not staying on meds. People with bipolar disorder DO generally need meds. People with bipolar disorder do have a tendency to question their diagnosis. It's all true. You know that I've supported you extensively here. My main worry for you is that you need to work on the grieving process. I'd strongly suggest you not jump into anything rash (like quitting meds) at this juncture.

My first psychiatric hospitalization happened about 6 months after my mother died young of cancer. Quite unexpectedly, like your mother died. That set off a string of 10 psych hospitalizations for me in a period of 4 years. Some of those hospitalizations were because I tried quitting meds again and again. They turned out traumatic. I did not process the grief properly for a long time. Don't you know that I would want to SPARE you such a period of trauma? Almost my entire 30s was a horrible period. I wish I had that back! I wish I had my mother back, but that's not going to happen. I had to work on that acceptance and growing strong again after such a loss. Weakening myself by quitting meds and irrational behavior (i.e. drinking) exacerbated the situation. This is the truth of the matter.

Sorry that I don't find pleasure in arguments that go in circles, like a dog chasing its own tail. This will be the end of what I say here.

[Sometimes psychotic]

Originally Posted by Miss Laura

I don't like re-reading my posts I find them utterly rubbish if I'm honest. I don't think I'm in psychosis. I seem to have a handle on reality and what is and isn't acceptable. I'm rationed enough as I understand the implications of not taking the meds.

I'm just really indecisive this is my biggest problem. I just can't decide what to do for the best my head is telling me one thing but my heart is saying another. My head is over ruling me unfortunately

I know meds are best I just resent them and taking them is making me sick cause deep down I know they aren't for me. I did ask my CPN re life with no meds and she said it is possible but it's all the alternative therapies I would need which would cost me a bomb. I wouldn't get it on the NHS so I would need to pay for it myself which I don't have that kind of money.

I'm arguing the diagnosis again. She says ask my Psychiatrist. I always feel they are holding back on what's wrong with me. I just don't see bipolar in me. I've been reading a book on bipolar and I don't see myself in bipolar 1 (my apparent diagnosis). I speak to my Psychiatrist on the 8th Feb. But I know what he will say you do have bipolar 1.... but why can't I see it?

Bipolar makes me angry as I lost everything with this diagnosis. I just don't know who I am anymore

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I don’t feel bipolar 1 either…I think it’s just a catch all for recurrent psychosis that’s not as severe as that in schizophrenia. So my take is if you can’t afford the treatment yet, you know it’s meds for now. That doesn’t mean forever though, give it a year and see where you’re at and reassess. I will say I’m also indecisive but I believe to be due to the adhd which a lot of us also have if tested.

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[Miss Laura]

I just want to say I don't feel like I'm in psychosis. No-one has noticed a change in me. I don't get hallucinations currently. I know I have in the past. But currently I'm fine. I have had delusions in the past too but I don't think I have them currently. Again I have had paranoia in the past but I don't have it currently.

I feel like the meds dumb me down and I am free currently in my mind I feel like I'm not dozed down like I have been.

Yes I admit my anxieties are high, my sleep is out of the park as in I'm struggling to get to sleep and get up, I'm talking to myself more of late too... but I think that's it. I don't think I have any other issues.

Forgive me if I'm wrong but I can't see a difference other than the last paragraph.

I'm building up the courage to tell my Sister but as of tonight I'm struggling to tell her. I hate disappointing people so not telling her means she isn't disappointed in me. If that makes sense?

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[MuddyBoots]

You may not notice a dramatic sudden shift in mood right away just because you quit your meds. It can creep up slowly over time after some time being stable. I suggest telling your sister so somebody irl knows just to be on the safe side. She can be more alert to your symptoms and may very well notice if you're heading up or down before you do. Would you be willing to go back on your meds if you become symptomatic again?

[Miss Laura]

I really don't know I'm pretty dead set on not taking them.

I'm speaking to my Psychiatrist on the 8th and seeing my worker on the 2nd. So I'm gonna need to tell them some how that I quit and I resent them. I'm going to write it down so I can't chicken out.

I'm pretty anxious about it all tbh!

The injection made me freak out a bit... I'm kinda scared about accepting it. It's all poison. I just can't accept it.

You think after all this time I could accept the diagnosis and the meds too!! But I can't get my head around it all.

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