Into the system…

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Posts Tagged ‘Dr P

Bombshell…

with 16 comments

On Wednesday night Dr M dropped a bombshell and then ran away whilst it detonated.

Contrary to what was said in ward round on Tuesday, “yes, it does sound like a mood disorder. We shall discuss your notes and call you in later to discuss medication”, they are now questioning my diagnosis, saying my picture doesn’t fit with their understanding of Bipolar Disorder. Now, considering this is based on a half hour conversation with me and a couple days of uncharacteristically fast (for me) mood swings, I am concerned.

They said they want me assessed by the clinical psychologist, which may take “many weeks” before they make any decisions. She isn’t sure where I should wait, here or at home, but is concerned about my safety (which to be honest she needs to be! Being in here doesn’t exactly do anything to convince you life is worth it, when you have already given up).

She said she doesn’t want to change my medication as it might influence the assessment. No mention of taking me off my current meds, which could be doing the same!

Then the meeting was over and I was left to handle the fallout alone.

I am a little shocked. They haven’t seen my Priory notes as the CMHT has lost them. I was under the care of The Priory for many months and I think they had enough time to assess me. Not make assumptions based on a short conversation and observations over a couple of days, which have obviously been influenced by an overdose and stress!

I am concerned that the change of tack seems to have come after J spoke to them. What on earth did she say, especially as she didn’t exactly know me or get the full picture as I didn’t trust her?

I can also sense what is coming. A borderline diagnosis is ahead on the tracks and coming at me fast (or slowly as it’s the NHS). I wouldn’t mind if this seemed to fit, but I am fairly familiar with the criteria and nature of the condition. It doesn’t ring true with my experience. I have no fears of abandonment – I am fiercely independent and quite happy to accept someone won’t be in my life any more, e.g. when therapy has ended. I may miss the person or thing, but not object to losing it and will not try to stop them. I do not have stormy and unreliable relationships – I have been with my partner 7 years. We argue like man and wife and our relationship is strained by this episode of illness, but I don’t love him one minute and hate him the next. My mood swings are not generally reactive and *usually* slower than those suggested for BPD. I don’t suddenly want to kill myself after bad news. Yes, I can express frustration or be upset, but not out to a level that is out of the norm or to extremes. I do not act impulsively without considering the consequences. My major suicide attempts have both been a result of a huge amount of thought and planning. In fact, aside from my mood swings I don’t think I am generally a person of extremes. I also have no past trauma, which is often involved with the condition. I could probably half meet maybe 3 or 4 criteria, but never the 5 needed by the DSM or the descriptions given in the ICD. I’m aware I am having to simplify things through lack of space or time – my thumbs will fall off if I write everything I want to, but I think you get the idea.

Also worth noting that borderline PD is one of Dr G’s specialisms and she never mentioned it to me. She tends to be pretty straight with people, so if she thought it was that then surely she would have been able to say so? She also wouldn’t have referred me to Dr P, him being the mood disorder specialist.

I can’t help but feel this is all part and parcel of the way this label can be misused. Don’t fit classic diagnosis, don’t respond to first line medication, female, suicidal and have mood swings. Oh BPD will do. Lets try and put the square peg in the round hole.

Maybe they aren’t thinking Borderline PD, but the mention of psychologists and lack of anything else even remotely close, suggests they are.

I am also frustrated at the lack of desire to do anything whilst waiting for the psychology/therapy assessment. Even if it was BPD, medication can be helpful with treatment and is often following the same kind of strategy as Bipolar II. She may in a couple months time go back to my current diagnosis, make the same changes and in the meantime I have wasted months of my life stuck on this ward. There never seems to be much desire to get you out, unless they suddenly need a bed then you can be out on your ear, recovered or not.

There are a lot of questions and no one has given any answers yet. I wrote a list of the key practical ones and handed it to my nurse to pass on yesterday, but no mention yet. I suspect I will be waiting until ward round next week.

After all this, my bloke went to see Dr N yesterday for his opinion. I thought this would help but it has made me more confused. Apparently Dr N is quite pleased I am being reassessed as he was never convinced by my diagnosis and he even suggested Dr G wasn’t. I had suspected this myself, but when I questioned Dr G on it, she said she agreed with Dr P. My bloke and Dr N apparently discussed borderline PD for a bit too. My bloke also expressed his concerns about rumination (he seems to think if I stop overthinking and forget about my illness I will be okay) and my blog came up. Apparently Dr N didn’t know I was still doing it! Surprised by this as everyone else, including the CMHT knew. I kinda feel left out of my own care again, so am wishing I had been there yesterday, although I know it is not practical.

Since then I have spent a lot of the last day or so pondering all this. I had a visit from Em in the afternoon which was lovely of her and a short break from everything.

My bloke came in the evening. It was his birthday but he wasn’t exactly full of birthday cheer. Em had got me a cake to give him, which we shared some of, but then we spent the rest of the time talking about all this. He has been doing a lot of research, trying to fix everything and find solutions (typical man).

He has been going over the rumination thing and my lack of positive thinking. I know I overthink. I even overthink good things. The problem is I always have and it feels like part of me. Questioning that feels like a direct attack. It may be an exacerbating factor, but it isn’t the only problem and I also don’t know how I could really change this. I can tell myself to stop and distract myself, but the running commentary just carries on and questions me further. I will almost overthink, overthinking. Distraction works to a point, but when I stop I just go into thinking overdrive instead and I can’t distract forever.

He has all these suggestions of how I can get better and things I need to do. Thinking and therapy techniques, supplements, the usuals of exercise etc. Many of these I do try to employ already and it is all well and good to suggest them, but at the end of the day I am: a) unwell and that can make it hard to do anything, especially when I’m in crisis and all logic goes out of the window, b) stuck in here so many of the suggestions are impractical and c) they may help to some degree but none of these things are going to fix things.

It still feels like he basically wants me to buck my ideas up. I was getting frustrated by this. I know he means well and is trying to help, but I wish he was perhaps more sensitive in his approach. He has gone from acting caring and supportively over the last couple days to criticising me again. I do wish things were all as simple as a bit of CBT, some positive thoughts, routine, eating and exercising well and some distraction. Sadly they are not.

Edit: Maybe this is unfair. The conversation was frustrating and I did feel attacked at times, but I am glad he is trying to help. Some of his suggestions were helpful. There are good bits within the bad. I do just find it hard to see them and I don’t know how much I can do right now.

Today looks pretty bleak and pointless. More waiting and the thought of another long weekend ahead is tiresome. I asked about having Nikki, coming to visit so we could have a walk around the grounds, utilities the nurse said I need to get it sanctioned by the doctor. Considering I am not on a section and would be escorted by my partner this seems unfair. I wish I could just walk out and although in theory I can, they are unlikely to let me. A section would probably beckon, if only an assessment one.

I am tempted to ask for some haloperidol! It is the only thing to ever sedate me and although it turns me into a zombie, I’d quite like to sleep away a few days in an antipsychotic-fueled daze right now. It is not practical in the real world, but in here it doesn’t matter. I don’t have any PRN written up as nothing really works.

Anyway this is pretty long and I’m scared it won’t post! I better go. Xx

The ECT Experience…

with 3 comments

Whilst I was having ECT I never really wrote about it. I was in hospital with only mobile access to the Internet. I was exhausted, often in pain and not really in the mood for writing. Recently though I’ve been inspired by this blog and Seaneen’s appeal for ECT info to document my experience. I’m worried that if I don’t do it now, I’ll forget what happened all together.

Ultimately my experience with ECT was a failure. I had 11 treatments, some unilateral and some bilateral. I barely responded at all and in the end we gave up.

ECT was seen as the last resort. I was about as severely depressed as you can get and no one knew what else to do. I wasn’t sure about having it, but at the time I wrote that anything was worth a try. I think I was so depressed I didn’t really care what happened to me. I know I secretly wished it would go horribly wrong, so overwhelming were the thoughts about death.

I went into the treatment with a smidgen of hope as at least we were trying something. I felt little, but I knew my family wanted it to work. We had to believe it would work, as the alternative was too horrible to comprehend. Other patients at The Priory had been through ECT and come out the other end much improved. ECT had been lifesaving for them and I hoped it would be the same for me.

The procedure was a lot less scary than I had feared. We were woken early by the nurses, our blood pressure and temperature taken, then we were bundled into a taxi with the nurses over to Cheadle Royal. The Priory doesn’t have an ECT suite any more, so treatments were taken there.

There was a waiting room, where we’d sit waiting our turn. There was usually three or four of us being treated at the same time. Three from The Priory and a day patient from elsewhere. Eventually we’d be called into a prep room, where a girl would wash our forehead and neck and attach EEG stickers. Next we entered the treatment room. We’d climb onto a bed and Dr Shock would ask us how we felt. We would be attached to the monitors and then the anaesthetist would take my hand and try to insert a cannula.  This was where it got difficult to me. My veins are small and deep and finding one proved near impossible at times. Multiple attempts, hands like colanders and a number of bent needles later and we would be ready to go. After a few treatments like this, the anaesthetist ordered some microwave lavender bags, which I’d be given to warm my hands. ECT quickly became associated with the smell of lavender.

I’d never had a general anaesthetic before my first treatment and I didn’t know how I’d feel. I soon got used to the feeling. Twice a week for nearly 6 weeks, you have little choice. The liquid would ooze into my veins. I could feel the cold liquid flowing in my hand and then I’d drift off into a blissful sleep. When I was ill I’ve never had any other sleep as nice as that. Next thing I knew I was in the recovery area, oblivious to what went on whilst I was asleep.

Throughout my treatment and since, I’ve always been curious to see what happens in between those moments. I often wondered about asking if I could watch someone else go first, but was certain I’d be turned down. I know they apply a current to my brain and I have a fit, but what does it actually look like? Who does what?

A few times I awoke covered in blood. The cannula would slip out during the fit and I’d be left with a red tshirt. The first time it was a bit of a shock and slightly scary, but once I knew what had happened it was okay.

As we woke up, our vitals were taken regularly. Each of us would have a nurse, who would keep a close eye on us, administering pain relief if required. It was always required. An hour after our treatment we would be allowed up and given tea and toast, or water and toast in my case. Then we were bundled back into the taxi and taken back to the ward, where we usually went straight to bed.

At the time, the side effects weren’t so bad. I usually had a thumping headache, more so after the bilateral treatments. Sometimes I would ache all over. My jaw was often painful. My appetite was normally dodgy and I felt queasy from the anaesthetic. My memory seemed to be pretty much in tact. I’d written all my passwords and things down before I went, but I don’t think I ever needed to refer back.

I didn’t really mind the treatments, but I was frustrated at the lack of response. The night before each treatment we’d be given the BDI and would tick the boxes and I couldn’t see any improvement. I know my scores did improve a little, but one or two points is nothing when it is scored out of 60-something and the miracle I was hoping for never materialised. There were a couple of days after one of the early sessions where I became quite hyper and agitated for a short while, but that didn’t last either and could have been down to something else.

One of the others having ECT with me improved fairly rapidly, which was great news for her, but I remember feeling a little jealous. She was discharged from hospital before I’d even finished the treatment, although I think she had a couple of sessions whilst she was an outpatient. The other person improved gradually, but she did improve. She would have a boost for the first day or two after the treatment and the improvement would ebb away, but over time it seemed to ebb away a little slower. ECT definitely helped her to get better, although I don’t know how she is these days. I seemed to stay the same regardless. ECT wasn’t working for me.

Dr Shock would ask me each time how I felt and I never knew what to say. She would tell me I looked brighter, but it felt like she was only saying that to convince herself it was doing some good, not because she really believed it.

Towards the end, I knew we were running out of steam. I could see the medics were giving up. When the decision was finally made I wasn’t surprised but I was disappointed. I felt like a failure and I felt annoyed that it hadn’t worked. It was meant to be the cure and it failed. I felt like I should have tried harder to make it work. I worried it was my fault and that everyone thought it was my fault and that I just didn’t want to get better.

There is something to be said for it. It may not have actually lifted me out of my depression, but I think it did help keep me safe whilst I was at my worst. I suspect my insurance wouldn’t have renewed the funding if I didn’t need to be kept in hospital to have the ECT and at least whilst I was having the treatment I was often too exhausted and unwell to act upon the suicidal thoughts that were so strong at the time. Maybe if I wasn’t being told to wait and see if it worked, then perhaps I’d have been more determined to kill myself. I don’t know. I guess you never can know. Maybe I’d have been even worse if I hadn’t have had it, although I don’t know how much lower I could have got.

After the failure, came the assessment from Dr P and the diagnosis of Bipolar II Disorder. It was suggested that my lack of response to “traditional methods of treating depression”, showed that I wasn’t suffering from “straight” depression. I had suspected that for a long while before, but I don’t know why it took ECT to decide this as I know ECT can be used to treat Bipolar Disorder too. I am grateful for the ECT for accelerating this diagnosis, but it seems an awful lot to go through just to get another assessment.

The long term effects of ECT have only been showing themselves over the last few months. I didn’t think the memory loss was significant, but as you go through life there are reminders of what is missing. People mention things that happened and I have no recollection of them at all. Silly things like ordering a meal in a restaurant commenting that “I’ve not had this before”, only to be told that I did back in April when I went there with my parents. Not only had I forgotten my order, but I’d forgotten I’d even been there with my parents.

It’s not just from the treatment period either, but before too. A lot of last year has disappeared and I only have my blog and my family’s memories to remind me. Distant memories that were once clear are now fuzzy or gone completely. I have lost a lot more than I’d realised at first. They say that the memories will come back with time, but I seem to be forgetting more, not less. I don’t know if it’s just because as time goes on I find out about more of what is missing.

I don’t think my short term memory is that bad. I am forgetful, but I’ve always been a little. For most people it is the short term memory that is worst, but I seem to have got off fairly lightly on that front. I guess this is something.

I’ve alluded to this at other times, but I think ECT has had an effect on my thinking ability too. It’s hard to know for certain, as depression can stunt your cognitive abilities too, but I am not as sharp as I used to be. My partner often says that I’m slow. I am not very quick on the uptake at times. I find it harder to think and harder to solve problems. My arithmetic seems worse than before.My concentration is poor. Even when I’ve been a little high, I don’t feel as capable as I did before. Things I used to find easy can be a challenge. I feel like I’m a little blunted. I pride myself on my intelligence, yet I don’t feel as bright. I wonder if I’ll ever regain what I used to have and if this will improve.

Along with the memory and cognitive effects, there is a physical side effect. The right-hand side of my jaw has been problematic ever since. It locks and it grinds. Sometimes I can’t open my mouth at all. Other times I get shooting pain right through the side of my head, where my jaw is stuck or out of place. I don’t know if there is a solution, but I suspect I will be stuck with this for ever now. It may not be anything major, but it can hurt and is annoying.

I don’t think I’d mind these effects at all if ECT had worked. If I was now stable and free of depression these issues would be worth it. It’s just that for it all to be in vain, it seems a lot to go through for no gain.

I am still disappointed. ECT had been that final resort and was something I could hold in my mind as a possibility for change. For me, I always need to know that there is another option and this was just another one that we have exhausted. When I have run out of options then I will really give up. I don’t think I’d go through it again, even though for some it can work a second time when it had not the first.

All that said, even though ECT didn’t work for me, I still wouldn’t discourage people from trying it. You have to weigh up the potential benefit with the possible effects, but if it works, I think it is worth it. It is usually only used when all else has failed and in that case what else do you have to lose? I have seen it work for others, I am just jealous it didn’t for me.

A Little Shaky…

with 2 comments

Just a short post from me today as I’m posting from my mobile.

Yesterday, I had my appointment with Dr N. Afterwards I was left more confused and clueless than beforehand. The NHS are hopefully going to provide community support and work with The Priory but at the moment nothing seems to be organised and neither party knows what the other is doing. I was left panicking that I will be left on my own with no support. There is only one possible outcome if that happens.

Today, things are more positive. I saw Dr G and she reassures me that things are in hand. She wants everyone to work together but is aware that may not be possible or straightforward. If things don’t work out as hoped she is sure something else can be arranged that will give me some support. I just hope she is right.

My past experience of NHS mental health services, or rather my trust have been shaky at best. Dr G assures me that her experiences with them have only been positive so I hope that with her on board then maybe mine will be too. Time will tell.

As for shakiness. The Depakote seems to have given me a tremor. I can’t control my hands and it is making typing this post on my phone harder than normal. I feel a little dodgy in general today. Dr G said that is to be expected as my meds are being tweaked so much, but it still sucks. I’m coming off the Duloxetine now. Still on amitriptaline. Reducing my aripiprazole and adding the Depakote. It’s no wonder is it? No other side effects seem to be a problem so far with the Depakote but it’s early days.

Aside from talking about NHS involvement, we also talked about my diagnosis and it is confirmed as Bipolar II disorder. I am glad to have Dr G agree with Dr P and make things clear for me, but it is still sinking in. I don’t really know how I feel. I need to think about it some more. The clarity is positive though. Maybe it will bring about a better route in terms of treatment. Things have to improve. They can’t continue to be as hopeless as they have been.

Anyway. I should stop rambling. More soon…

Assisted Suicide…

with 5 comments

Yesterday, a conversation with my sister got me thinking. She was telling me about someone she knows whose son fell several stories from a window in a tragic accident and he is now tetraplegic and currently unable to talk. We were talking about how that would leave him with no quality of life and that we’d rather be dead than be left in that situation.

The conversation then moved onto assisted suicide, because he of course is so disabled he would not be in the position to take his own life. It probably comes of no surprise that I agree with assisted suicide and would support it in this case. I think a lot of people would agree with me in this case and for other chronic physical conditions.

However, I wonder how many people will agree with me that assisted suicide is the logical outcome for someone with a severe chronic mental condition too. I feel as if I am teetering on the edge of falling into that category. I feel as if my condition is affecting my quality of life such that life is not worth living and I am potentially facing the fact that I am living with a severe and chronic condition.

I am currently holding on with the hope that my new medication might be able to help, but I have little hope. I’ve tried so many medications I’ve lost count (It’s around 20!). How is this one going to make any difference? I feel as if I wouldn’t be able to hold on if I was given the choice, but I am not.

I am still absorbing my new diagnosis. I saw Dr G today and she said that she was leaning towards the same conclusion of Dr P and is going to follow his recommendations. I am trying to hold onto the hope that this is a positive thing, because it gives me a label to understand and finally means that there will be a change of tactics in terms of treatment, but I am struggling to handle the thoughts that bipolar II means that I will be struggling with this for life. Even if we find a way to manage the condition better than we do right now and if this episode eventually passes, it is still likely that I will go through further periods of depression and will again feel as crap as I have done over the past year.

I am not being discharged for a week now. We were thinking Friday, but with a medication change, next Wednesday seems better. That is when my insurance runs out, so is the logical end for the admission. I cannot afford to self-fund any longer and I have been here so long, a full ten weeks, that I have done most of the therapy on offer here and I’m starting to get bored. It is time to move on, but preparation for discharge is difficult and stressing me out. I am anxious about leaving and entering the real world. There is a lot for me to handle out there and I’m not sure I can manage it. Time will tell.

A label…

with 4 comments

Earlier today, I had my second opinion meeting and review with Dr P. I wasn’t given much notice. The ward doctor, Dr C, just said he will be over in a few minutes and fifteen minutes later I was sat in a room with him and Dr C answering questions. It was a bit like the nth degree. My memory is sketchy and I struggled a little, but I gave him an overview of my moods over the past few years. He was keen to find out if I’d had any ‘up’ periods and although I have, I don’t want to exaggerate any of them so didn’t really know what to say. I just tried to explain how I was at various points in time. He had a little bit of knowledge about my history before he started and seemed keen to get an overall picture of my mood cycles. He asked about my agitiation also. It was a different approach to Dr G, who was more keen to get an idea about how I felt and what I thought. They’re polar opposite doctors, but both good at what they do.

Anyway, Dr P eventually said that based on my lack of response to ECT and anti-depressants he believes I have bipolar II disorder and thinks that ADs are not going to be helpful. I hadn’t realised that my lack of response to ECT could be seen as a test for bipolar. If I had recurrent depressive disorder, I’d likely to have had some positive response to the ECT, but because I haven’t, it probably suggests that anti-depressants are not going to work for me. He talked about how some people with bipolar II do not respond to ADs or traditional treatments for depression such as ECT and that was why he was suggesting that diagnosis.

He wants to start me on an old school mood stabiliser, so is putting me on Depakote. I am a little scared as I’ve heard bad thinks about Depakote, but everyone responds differently to different drugs and anything has to be better than the current situation. He is keen to take me off anti-depressants altogether. I’m glad it’s not lithium anyway.

He asked me what I thought and said that he suspected it didn’t really come as much of a surprise. At the time, I said not. I told him I knew a reasonable amount about the condition as I had friends with it and I had in the past suspected that it fitted. Thinking about it since though, it has been a bit of a shock. I’ve been seeking a diagnosis for so long and not received one, so to finally have one is a bit of a shock. It’s an unpleasant surprise too because I know that it can be an awful condition to have and I’m not sure I really want it, even if it does fit. After all, the last year has not exactly been a barrel of fun.

Dr G doesn’t yet know the outcome of the meeting. She isn’t in work today, but she is coming in tomorrow to see another patient so Dr C has written her a letter telling her about the meeting. I may end up seeing her tomorrow to discuss. I’m a little scared about her response to all this as I’m not sure what to expect. I presume she was aware that this was a possibility, because she wouldn’t have got Dr P involved if it wasn’t. Everyone is aware that Dr P is a specialist in mood disorders, especially Bipolar, and if anyone is going to spot it, it will be him.

Generally, I am still absorbing the information. I have suspected I would eventually end up with this label for a while, but it feels weird to finally have it. Dr G has avoided it so far and I wonder why, yet she obviously had her suspicions or she wouldn’t have got Dr P involved. I just hope she agrees with what has been said and is comfortable with it.

I think this has given me a little bit of hope. Things are changing, which is something positive. Hopefully, the new medication regime will improve the situation. I know it isn’t going to change things overnight, but it might pick things up. There is also the fact that this diagnosis should ensure I get more support. The CMHT referral is going through and they are trying to arrange a CPN before I am discharged from The Priory. The bipolar II diagnosis will give that referral more strength and also mean that the NHS pays more attention when I need support.

Aside from that meeting, I also have my GP coming to see me later today. I am a little nervous as there are a lot of things I have to cover with him, but he is lovely and I need to get over that fear. We shall see anyway.

A Second Opinion…

with 2 comments

I went into my ward round this morning with some notes that I’d prepared in advance. I am fed up of going in to see my consultant and not knowing what to say to her. I am fed up of going in to see my consultant and forgetting everything that I want to share with her. I am fed up of the blankness that descends the second I walk into a room with her. So I was prepared. I have been trying to write the notes for a few days and found it quite difficult, but I did get some of it pulled together and managed to get them printed off when I was home yesterday. I handed her the notes as I went in and she read them quickly. I hate that moment. I want the world to swallow me up so I don’t have to sit there as she reads the inner workings of my useless and faulty mind. We get there in the end though and she finishes reading my notes and then begins to answer some of my questions in her usual evasive manner.

She wants me to see one of the other consultants here for a second opinion. I get the impression she is a little flummoxed by me and does not know where to go now. She wants me to see Dr P, who is a specialist in mood disorders, especially bipolar disorder. She warned me he is not in any way shape or form, touchy feely and I’ve heard from others that he is very medication focussed, so will probably listen to me talk for a little while and then dole out meds, but it might be interesting to see what he has to say. I am a little scared though. I hate seeing doctors for the first time.

Aside from the second opinion, she talked about working on my care plan with her on Thursday. The idea is we will work out a plan for when I am out of hospital. She has already contacted my NHS trust with the hope they can provide me some support when I am out of The Priory, but I do not really trust them to be any help. Maybe with a respected psychiatrist or two on my side rather than just a single GP, I might have a bit more luck. We will see I guess.

Finally, she wants to refer me for some long-term psychodynamic therapy. Probably in group format, but she needs to find something suitable to refer me to. I’m a little scared at the prospect and worry that I will dread it in the same way that Alison does, but I think group therapy would be better than one to ones. I find individual therapy a terrifying prospect. I guess we will see what happens.

So.. Despite the fact I was waiting for hours this morning, it was a useful ward round. I just hope Thursday is helpful. We will see I guess…

Written by intothesystem

Tuesday, 14th April 2009 at 4:54 pm