Im sorry things didnt go well. They must take you seriously to offer appointments on such a regular basis. (I havent had a cpn for 9 month).
I think a letter is a good idea, but to get accross the point of how you dont think they were listening properly or taking you seriously; not the point of how you dont want to see them again. Also, talking to your social worker is a gd idea. Mental health services are pretty strained so Im sure its nothing personal. And for your psych to want you back on an antidepressant and increased your quetiapine dose, he must have been listening that you were struggling lately.
Please keep on your meds. The psych knows most about meds and if he doesnt reckon they will interact, then its unlikely they will. How are you getting on with the clopixol? It seems to be fine so far?
What do you feel they could do more to help?
Ami x
I dont know. It's the fact that I feel that I wasnt listened to that really is hurting me. I just wish I had the opportunity to raise that concerns on Thursday, and not been so dismissed easily. I feel that I can no longer trust my CPN nor my psych, which of course will effect my care. I think that the change of worker is necessary (as my CPN is my main care co-ordinator, my social worker just steps in when I need extra support or for various reasons my CPN is not around) and also psych. Maybe there is a chance that given a suitable apology from my CPN that we can perhaps mend our relationship, but there is one comment that I feel that I cannot forgive my psych for. Which is damaging as I feel I can no longer be honest with him, nor trust him, which means if the voices are bad, or things get significantly worse.
In a way it is a sad situation. Prior to this incident I would have deemed my care from my CPN as excellent. But I do think that giving her the letter is the right thing - at the moment it is still on my laptop so I still have time to amend it this weekend, so at least she knows what is that she has done wrong. I do want to give her that opportunity so that she does want to know what has gone wrong, and how to avoid it either with myself (if our relationship can be fixed) or other people, either now or in the future. After all, if she doesnt know what she has done wrong, how can she fix it? I do really like her, which is also hurting, which is part of the reasoning behind my letter.
Initially I did say that I thought the situation is irreparable, now I am not so certain. I did think last night of a point that I did not raise in the letter, so there is still some editing to be done. This point is extremely important and I do feel that it must be included. Initially I did write that I would be writing to the health trust to complain, however I am going to take that out as I do not deem it necessary. (As I am in Wales, we dont have PALS to complain to, and the complaint must be to the complaints department of the local health trust. A local health trust is similar to England's PCT.)
I have said in the letter, that I am willing to talk to my social worker as she has no part in the situation, and has yet to hurt/dismiss me.
As for the clopixol, I do not know. My CPN was the only person I was going to ever trust to inject me, obviously if I decide not to have her, then if I do not get assigned to another CPN then there would be nobody to give me injections. There is a weekly clinic, but the problem is that other than having to get used to some random stranger injecting me (and again that it comes down to the trust issue) that also she runs it every so often. So knowing my luck it would be the week that I need it that she is taking it. Which would not be great. If the situation turns out that I need to take a break and work up the trust with her, I am not sure if I need the initial test dose again or that she would go straight in with the 150mg, as I have never had a depot, so I am not sure how it works. Whatever happens with the clopixol issue, I am at the moment taking the quetiapine, so at least that is something. I do not plan to stop taking the quetiapine at the moment. It's whether to increase I am uncertain of.
As for how it reacts, so far I have had nothing as I have had only the test dose so far (I am supposed to be getting the injection on Tuesday, if I do let my CPN do it). Beyond the sore bottom on the day of the test dose, I have nothing, no reactions. But on the other hand, I do not feel it has done anything either.
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
I did revise the letter. Rather than "I hate you because you did this, and never want to see you again" it read more like "I am upset because you did this, but I think the situation is repairable". I did say that prior to this event I felt that she gave excellent care though. I am still upset about my psych, and I did say that I was unsure about the relationship with him, about whether or not it can be repaired.
I gave it to her when she came before, but because she was late, she didnt read it. I did warn her when she read it that it would be better that she read it when she had more than 5 mins to spare! I also warned her it was quite long (6 pages long!), though. She said she will read the letter tommorow.
I removed the bit about complaining to my health trust (as I dont think it is necessary) though, so she doesnt have that hanging over her. I explained why I didnt attend on Friday and seemed quite happy with that (which is also explained in that letter). She said she was very happy that I did write a letter than being upset and not explaining why and the anger building inside. So I am happy I went down that route, and I am glad that I gave it to her. I know (as it concerns him) that she will either give the letter to my psych or email him the details, so I am worried about him knowing, and him reacting though. I do have an appointment with her next week, unless she contacts me tommorow about the letter when she reads it.
As for the clopixol. In the letter I said that I didnt want it, as it would mean relying on her. However in that part I have been a contradictory: she actually gave me the injection (and I agreed to it!). She actually worked out that when she goes on holiday next month that I am due an injection, which is a little bit worrying, as it will be awkward then. But we will work out a solution then. Unfortunately my social worker cannot give it.
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
Sounds like you made a reasonable response, nice one .
Thanks Ami. This version of the letter was more positive than the first version I made, so hopefully she will take as, well as me explaining where things went wrong. Hopefully (I say hopefully because although she made an appointment for next week, that was before she read the letter) she will continue to be my CPN after reading it. It's my psych reading the letter (or my CPN emailing the contents to him) that I am dreading the most. I know she will definitely be in contact with him because it is also (in parts) aimed at him.
The reason why I took the less angry/negative route is that I thought about it. Like I said in a previous reply, I considered her care excellent prior to this, and I like her a lot. (I also, prior to this, trusted her, which is important because I have trust issues.) Hopefully she will see why I am a bit "off" with her is because I dont trust her as much (again explained) as I used to and am hurting (though tbh a comment my psych made hurt even more, again explained). I also said that I thought our relationship was repairable, given time. I did say that I thought she hurt me unintentionally (again, explained in the letter).
She also said that once again I was brilliant with the injection and seemed less anxious about the injection. Which is true, but I wasnt totally calm as I am still angry and hurt about Thurs. I was also a bit anxious about meeting her. But all in all, yes it was easier (and why I agreed, despite writing in the letter no!) than last time. Also she has a knack of calming me down though, and like before, went through every single thing, which also helped.
I dont know if (for those of you who dont know anything about depots, they inject one side of your body one time, and then the next time they do the other side) it is to do with the fact that it is the other side, but my bottom isnt sore, but it just stings a little!! A lot less painful than last time, but at least I am not sitting on a cushion!! Hopefully tommorow I wont wake up with a sore bottom. If that is the case, it may be the case it was a one off (as it was the first time the stuff was in my body, it caused that reaction) or it may be possible that I only get that reaction on one side only. I guess I will find out tommorow, and/or in about 2 weeks time (when I have the injection the same side as the test dose).
So yeah, only time will tell what happens with my CPN and psych. But anyway I have had my first proper dose (which was slightly higher than the test dose; I am prescribed 150mg every 2 weeks) now.
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
I have a massive (and I am not joking, it's nearly 1/4 of my left bum cheek) lump, which looks an angry red one. It's constantly hurting (not so much that it hurts to sit down) but when I do bend down or I catch it anywhere (like today I caught it on the edge of the bus seat) it's sheer agony. The sheet that they gave me did warn me about lumps in the area, but this is a massive one. So when my CPN comes next week I need to talk to her (it says report to nurse on the med sheet). I also want to know if it just happens to be an reaction when I am injected on my left hand side, an one off or if it will happen every single time I am injected (when I got injected on my right it didnt happen).
I also am suffering from increased muscle stiffness in my legs, and now in my arms. That is also agony, but I have to take 10mg (on the quetiapine it was 5mg) of procyclidine. With the quetiapine I only got it in my legs. It's also impacting a lot on my life: my voluntary job is quite active: you are up and down, and using your arms a lot. So I cant do it so fast because of the pain. I also had a stiff jaw yesterday and on Wednesday nearly choked on my sandwich because of this.
Also I found that for the first two days I had dizziness in the morning, thankfully it has stopped now. But that morning I had sore breasts, so I am wondering if the Clopixol is increasing my prolactin level, which apparently is quite common.
So yeah, I am not so happy. Mainly it's the big angry red lump that is giving me the most problems right now. It's just painful and I am hoping that my CPN has some advice about what to do to stop it hurting so much (other than stopping the injections), and also answer the questions I have about how likely this is going to happen again. It's that side effect which so far, is make me liable to stop the injections.
So yeah. I am not due another injection until a week on Wednesday, so depending on my CPN's answers about the lump, will decide if I have the injection then.
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
Well in the end I never got to ask my CPN about the lump, due to various problems with her. She says that the lump is definitely gone though, but asked me if I wanted the injection. I said yes because I wanted to know if it was either an one off thing, or something that happens every time, or something that happens on one side. Or alternatively it could be each time I have an increased dose.
Today I had my third injection, which was the same side as the test dose side, so I will see what happens. Right now I just feel tired and my jaw is a little bit stiff. But I guess that I will find out tommorow: since it was the case, that when I woke up the next day I had the increased muscle stiffness in my arms/legs and the lump appeared.
She said that the fact I had a massive lump is worrying. She said that in very rare cases that the oil (which most of the clopixol injection is made up of) does not actually go into the muscle, which means that the clopixol is not released into the bloodstream, and doesnt travels into your brain (and therefore doesnt work!). She said that also it looks like I am one of those people, which means I cant have any injectable antipsychotic.
Which means if that happens, I will have to discontinue the clopixol and increase the quetiapine. Unfortunately she is off on holiday next week, if a massive lump does appear she cant look at herself.
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
Well I ended up with a lump (though nowhere as bad as the last time) and it is quite red. It looks like I am one of those people who my CPN warned me about: the injection is not going onto the muscle. So it looks like I am going to have to discontinue it.
It's annoying that my CPN is off, because by the time she comes back the lump will be gone. I will discuss the lump though with her, and see if she says that it's not a good idea that I have it, or wait to see what my psych says (since I have a psych appointment this month).
On the good news, is that I hardly got any muscle stiffness this time: I only had to take 5 mg as opposed to 10mg of the procyclidine! I only had it for 2 days as opposed to the 4 which is good though. I got none of the breast soreness so all the unbearable lumps/side effects seem to be when I have it on my left hand side (on friday I had it on my right).
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
Had my injection, on the left hand side which was the one that gave me the massive lump yesterday. My CPN said that if I turned out I was bad on that side that it was possible to have it on my right hand side only. She had a patient who could only have it on the right hand side. If I was having it once a week then it would not be possible, but been as I am only having it once a fortnight then it may be ok.
Well funnily enough, I havent had a massive lump at all on the left hand side. In fact I have had no side effects - no muscle stiffness, no constant yawning (which happens usually the day of the injection), no feeling sore on my bottom (which again happens on the day of the injection), nothing. Only a red mark where the needle went in. No stinging which usually happens within 5 mins of the injection.
The only thing that did happen is that the injection was more painful than normal when my CPN was doing it. So hopefully that big lump was an one off (as it happened the first time I had it on the left hand side).
I think it is actually doing something. Although I have the second voice, it is quieter and less aggressive than normal. I feel less implusive, less aggressive and calmer. The (second) voice is less of a nuisance than it has been of late. This morning it has been very quiet compared to yesterday. I dont know if it is the Clopixol, or a coincidence.
I have a psych appointment on Thursday, which I am not looking forward too and tbh I dont feel like going to, but if I do go to it, I shall mention it to him.
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
Thanks Ami. I have had a lump come up, but it is extremely small. My CPN told me if it was really massive (like the one I had last time on my left) then to contact her today. But I havent contacted her because tbh it's not worth bothering about.
My voice is very quiet at the moment, in fact it is almost non existant. So it looks like the Clopixol is working, and apart from the first 48 hours, I am preferring it so far (side effects wise) to the quetiapine (which is the other antispsychotic I am on).
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
Well last week the second voice stopped, which means I only have the one now. As I didnt see my CPN last week, I told her today. She was pleased though. I do have blurred vision though: it is bad when I first get up and the first 20 - 30 mins when I am awake. I also wear glasses so it is not so bad when I have them on, though the first 20-30 mins I still have blurred vision with them on. Other than that, it is either when I look over my glasses or take them off.
I did have an increase today though, to see how I get on with it. I am on 200 mg now, so I will see if I have really bad side effects. My CPN did warn that there was a possibility that the side effects may get worse because of that. She said that it shouldnt be that long before I start weaning myself off the quetiapine, but said to keep on it for now. Which is good, because I am sick to death of taking the quetiapine.
I also told my CPN that apart from the first 48 hours I am preferring the side effects of the Clopixol. In fact I am a little impatient to stop taking the quetiapine altogether. I want to stop taking it now!!
Last edited by not_so_insig : 28-07-2011 at 06:58 PM.
Reason: additional info
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
Today I have woken up with no more worse side effects than normal: though I did have the injection on my right which is the better side. It's when I have the injection on the left then I will tell if the increased dose is having any extra side effects. My CPN did say that the blurred vision may get worse: so far it is not.
I still have the one voice so things are ok. I guess the next major test will be when I discontinue the quetiapine, things may go worse then. I am not sure when I will discontinue the quetiapine though: I have an appointment with my psych on the 25th August so I will ask him then!!
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
I had the injection today. I am a little bit scared, because last time I had an increased dose on this side I had a bad reaction. But still.
I also had a brief chat to my psych after moaning to my CPN I was getting fed up of taking the quetiapine. He (my psych) said that I could stop taking the quetiapine, and see how I go. So if the second voice comes back I will then have to go back on the quetiapine.
I am really pleased that I can go off the quetiapine, I was thinking of taking myself off because I was so badly fed up of taking meds! So apart from the first 2-3 days I will be completely med free (since I am not currently taking the antidepressants - my psych is aware of this).
Oh and my psych appointment is no longer on the 25th August, this is because my CPN is having an operation, so I dont want to go (because of what happened last time I went alone) to the appointment without my CPN. So we had to rearrange it. The other downside is that day I am due my injection, as my CPN cant do it, I have to go to their clinic!! So it's very scary because I have a complete stranger doing my next injection.
Last edited by not_so_insig : 11-08-2011 at 06:40 PM.
Reason: changed word because the one I typed made no sense
Wannabe CPN : -)
"He who is tired of Weird Al is tired of life." - Homer Simpson "I hear those voices that will not be drowned" Sanity is a nasty disease. The world would be a happier place without it. - Rilic
RIP Kat 4th July 1987- 11th June 2013
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