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Cyclothymia - help and advice needed

J

Jamesd49

Member
Joined
Nov 22, 2018
Messages
10
Hi

I am new here, so I will go into my past in a little bit of experience.

I have all ways had MH issues
March 2017 - diagnosed with Dysthymia and emotional dysregulation
September 2017 - cyclothymia and anger management
March 2018 - traits of emotional unstable personality disorder (BPD)

Referred for an Autism assessment, joined the waiting list March 2018, expected assessment date March/April 2019.

I have been on medication in the past, but not currently on any.

So I have two things I would like to discuss, treatment and support from NHS and then the second one how I cope with my issues.

So I have had real issues with the NHS and my local authority, I am current attending CBT, which is going ok, but I have had issues with this in the past as I was given two councillors who didn't work for me and didn't help me, I had to fight for 4/5 months to see a third one, I finally saw a third one, after one of the first two left the service. But at the moment I am thinking of stopping this due to the help I am getting.

I had an assessment at my local PCLS service last week, as a new assessment, but they did it as a review assessment which wasn't meant to happen. I went into the assessment with two mental health nurses, they didn't even introduce themselves, one just sat in the corner, watching, not talking, which I felt was very odd and uncomfortable, the assessment was a waste of time, I have received my outcome letter and it was poor, they got basic information wrong and didn't offer any support, just referred me back to my doctors, who are useless and if I go back to them for advice they will just refer me back to PCLS.

So onto the second thing, I really struggle with mood management and mood swings, I can get a mood switch any time, it flips like a light switch, sometimes I can explain my mood swing, but sometimes it's caused by nothing. It can last for an hour or days, my last one started Monday lunch time and ended Wednesday night. I have coping strategies but they don't all ways work, most of my mood swings are down ones, so the only way I explain it is I am two different people. Normally I am a nice person, can cope in day to day life, with some small struggles which is where my potential autism comes into it.
But when I am having bad mood swing I am can be a bit aggressive, very short with people, if people contact me who are trying to help I will get rude with them and tell them I don't want any help, I have since realised this is why all my friends have backed away from me so lost all my support, I have also lost two jobs because of this, I have tried to explain to both employers about it but they just didn't care or understand. So as you can understand its very difficult.

I get very stressed and very frustrated with people and the situation I am in.

Would appreciate any thoughts or any help on my issues, your welcome to ask any questions if you have any.

Thanks
 
T

Tabby 88

Guest
For me it was medication combined with not asking them for help. The way they acted, their strange methods, caused mood swings and anger in itself, so i discovered i felt much better when i was not having to deal with them. I presume the extra nurse there was to make sure you didn't thump the other one, as you have anger issues on your file. You should see your gp, stick to one doctor you can build a relationship with and who is reasonable and normal to talk to. Utilise help from other places like books, peer support groups, online forums, any workbooks. You can do CBT yourself. You can call the samaritans rather than seeing a counsellor or can have an online or telephone counsellor if you wish. The counsellors i have had have been very dim or just didn't get the point. You can counsel yourself.

I have also pushed friends away but you can make new friends. Spread yourself out so that you don't tire out one friend. Give them breaks from you, that is what i do.
 
J

Jamesd49

Member
Joined
Nov 22, 2018
Messages
10
Thanks for responding. I have done some asking around and I believe it might have been a senior consultant, but there was no reference to the second person in my assessment report, so seems very strange. The issue with my GP, you see who ever you are given, if you are ringing up on the day, it's who ever is next on the appointment list, I have requested to see the same one and got denied. The issue is all the doctors I have seen at my GP practice have no experience or confidence on mental health issues, they just refer you, they are normally late and have 10/15mins per person. The last time I went to the doctors they was 40mins late seeing me.
 
T

Tabby 88

Guest
Thanks for responding. I have done some asking around and I believe it might have been a senior consultant, but there was no reference to the second person in my assessment report, so seems very strange. The issue with my GP, you see who ever you are given, if you are ringing up on the day, it's who ever is next on the appointment list, I have requested to see the same one and got denied. The issue is all the doctors I have seen at my GP practice have no experience or confidence on mental health issues, they just refer you, they are normally late and have 10/15mins per person. The last time I went to the doctors they was 40mins late seeing me.
Are you taking any medication?

Most surgeries have a mental health gp now or a link worker. At mine, i see the same gp each time and they prefer us to do that. I know it is different in other places. I feel that really we are mostly responsible for ourselves now, finding help ourselves. I have done that repeatedly and now i don't think i need it. I don't need to call anyone or talk to anyone as i have talked and written so much now. Peers have helped possibly more than anyone else.

I was on a peer support forum which really helped. I learnt so much and also learnt how to communicate better and more carefully with others. You could say i was raised by peers that i had never even met. It is a steep learning curve but i am glad i did it as i needed to learn to care for myself and not need to find others to keep me afloat.

Your illnesses may need medication, but if they do not, the other help you need, nobody knows you like you know you. We are intelligent and well able to understand ourselves over time by thinking about how we feel. Slowly you will naturally analyse your life and how you act and why. A counsellor is just another person with an opinion and maybe not even the right one. Just a person who is interested in people and would like to help. The samaritans can do the same. I talk to myself or to other people that i cannot see, my dog, my cat. A psyhiatrist often does not speak back to me anyway, so my cat is just as beneficial :)

I don't think very highly of counsellors and the rest of the MDT. We are more intelligent and capable than we give ourselves credit for sometimes.
 
J

Jamesd49

Member
Joined
Nov 22, 2018
Messages
10
Are you taking any medication?

Most surgeries have a mental health gp now or a link worker. At mine, i see the same gp each time and they prefer us to do that. I know it is different in other places. I feel that really we are mostly responsible for ourselves now, finding help ourselves. I have done that repeatedly and now i don't think i need it. I don't need to call anyone or talk to anyone as i have talked and written so much now. Peers have helped possibly more than anyone else.

I was on a peer support forum which really helped. I learnt so much and also learnt how to communicate better and more carefully with others. You could say i was raised by peers that i had never even met. It is a steep learning curve but i am glad i did it as i needed to learn to care for myself and not need to find others to keep me afloat.

Your illnesses may need medication, but if they do not, the other help you need, nobody knows you like you know you. We are intelligent and well able to understand ourselves over time by thinking about how we feel. Slowly you will naturally analyse your life and how you act and why. A counsellor is just another person with an opinion and maybe not even the right one. Just a person who is interested in people and would like to help. The samaritans can do the same. I talk to myself or to other people that i cannot see, my dog, my cat. A psyhiatrist often does not speak back to me anyway, so my cat is just as beneficial :)

I don't think very highly of counsellors and the rest of the MDT. We are more intelligent and capable than we give ourselves credit for sometimes.
No not on any medications, I was on dulexotine before but it made me worse.
My surgery has nothing like that, they just refer you elsewhere.
Ok thanks, I just struggle with my mood swings, it has a real effect only life, is preventing me from working, relationships, moving on with my life, as I just feel stuck in this bubble/routine of bad moods.
 
T

Tabby 88

Guest
No not on any medications, I was on dulexotine before but it made me worse.
My surgery has nothing like that, they just refer you elsewhere.
Ok thanks, I just struggle with my mood swings, it has a real effect only life, is preventing me from working, relationships, moving on with my life, as I just feel stuck in this bubble/routine of bad moods.
If you have bipolar, maybe you need a mood stabiliser, which a gp cannot prescribe. The psychiatrist did not think you needed a mood stabiliser? They either don't think your mood gets bad enough or you did not emphasise that enough. Did you make it all more complicated for them by talking about lots of other things? If you focus on your mood with them and how the changes are independent of everything going on in your life, they may see your point of view.

You could either present yourself at the hospital for assessment or convince your gp to refer you again with fresh information or worsening of mood.
 
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J

Jamesd49

Member
Joined
Nov 22, 2018
Messages
10
If you have bipolar, maybe you need a mood stabiliser, which a gp cannot prescribe. The psychiatrist did not think you needed a mood stabiliser? They either don't think your mood gets bad enough or you did not emphasise that enough. Did you make it all more complicated for them by talking about lots of other things? If you focus on your mood with them and how the changes are independent of everything going on in your life, they may see your point of view.

You could either present yourself at the hospital for assessment or convince your gp to refer you again with fresh information or worsening of mood.
When I was on Dulexotine that was meant to manage my mood, but it didn't help, so I come off them. It was the psychiatrist/mental health nurse who thought dulexotine would be the best for me to try to help with my mood.
My mood management has got worse since seeing them and the level of my mood has got worse, I did raise it at my assessment last week, but they didn't even talk about it in my letter post my assessment.

I been told I can't have another assessment even though they didn't do it right in the first place.
 
T

Tabby 88

Guest
I am sorry to have written so much unhelpful advice before. It seems they are going down the route of mental health problems and not bipolar, but i don't know for certain. They have tried you with one medication and from my brief search on it, cymbalta also it is called, it is mostly for major depression and anxiety, although sometimes used for bipolar/cyclothymia. It can cause hypomania in some people. Is it an antidepressant? They cause me problems like you describe, and made me worse. I now have a mood stabiliser.

They are not being very helpful for you by not allowing you to try something else and preventing another referral and assessment is very cruel. Are you currently working? I have heard that if people are unable to work, they can be seen by the psychiatrist more urgently. How bad does it get for you? I am so sorry that i have no clue what you can do other than keep on at them. Have you tried 5htp or st johns wort? Again i think they will make things worse for you as antidepressant not mood stabilising. I would visit the gp every 2 weeks until you get some help. If it gets very bad, you can present yourself at the hospital for another assessment and they have to assess you. They can refer you to the psychiatrist themselves.
 
J

Jamesd49

Member
Joined
Nov 22, 2018
Messages
10
Your advice has been really helpful.
I have no idea what it was for, they didn't really explain what it was for or what it would help me with, they just gave me the prescription and sent me on my way.

I feel like I need to be seen by a consultant to get my mood swings sorted properly and get a better treatment plan, but this is being denied, but I would class that as the bare minimum they should be doing for somebody who is clearly suffering with mental health issues and is screaming out for help, which is leading me to get very frustrated, angry then would be causing me more mood issues because I feel so stressed and let down by the NHS who are there to help people and treat them when they need it.

I have worked in the past, but lost two jobs because of my issues and how it affects me, so I am reluctant to go back, if the same will happen again, as again it just knocks me back.

I have been to my GP a lot recently maybe once every two weeks, they even wrote me a letter to say if I go back again with mental health issues then I could be removed from the practice as they can;t help me anymore as they have referred me elsewhere, but the place they referred me didn't want to help me and sent me back to the GP, so I am stuck in a circle of the NHS.
 
T

Tabby 88

Guest
I am shocked by how they and the gp have behaved. It didn't used to happen like this and i am relieved i don't need their help at the moment. I have heard what it is like now which is why i am trying to take care of myself as much as possible but i know that my gp also has little patience so i need to keep him happy and not go to see him often. The less i go, the more he requests i go back, which is backward if you ask me. I fortunately have access to medication that works enough for me to function but not work though.

It is easy to understand why people make suicide attempts and why some people die from them. Private psychiatrists are very expensive unfortunately. You could try PALS and make a complaint although that could make things worse. There is no harm in asking them for advice and they have been helpful for me in the past. I think that is where you should go next.
 
J

Jamesd49

Member
Joined
Nov 22, 2018
Messages
10
Thanks for your reply.

I have spoke to PALS, they haven't even bothered to investigate it, they have just ignored it. They are so helpful where I live, they are useless, they don't even answer their phones, it goes straight to voicemail 99% of the time.

Any more suggestions? Sounds like it's just self management
 
T

Tabby 88

Guest
Exercise, eat well, no stress, rest, light box for the winter, stay indoors all summer. No coffee, alcohol, or anything exciting. One day you might open your eyes and not be able to move for the depression, and i hope you can call on help. A bad situation you are in and i hope it doesn't end badly. I expect you will struggle on for a bit longer now. You can call 111 whenever you need to and make sure you do call them. I think you should change your gp surgery as a priority. To refuse to discuss your mental health is shocking. Keep trying, or get on with life as best as you can and accept you have a disability because i am on medication, but still life is very difficult. Treatment maybe is not what it should be so maybe you are not missing anything other than weight gain, dry mouth and headaches. I'm not being serious enough now, this is your life, i'm out of ideas but i am sure that something will turn up to help. We are all moving forwards every day and everything changes inside us and outside too, so something is going to change.
 
J

Jamesd49

Member
Joined
Nov 22, 2018
Messages
10
I struggle to eat well and go out and walk when I am in a bad mood.

The reasoning is they can't help me anymore as all they do is refer people. I find a lot of GP's in this area don't know how to help or want to help as it takes up a lot of time talking to people, when they have 10mins per appointment.
Thanks for your help.
 
J

Jamesd49

Member
Joined
Nov 22, 2018
Messages
10
Hi
I was wondering if anybody else had any more advice for me?
I feel very much I am on my own, I have my well being coordinator at MIND, who has referred me onto other stuff which is good, but they are other charities, so high demand and potentially a month waiting list.

Is it bad that the charities are picking up for the NHS in mental health support?

I went for a week having a down mood, so that was 19/11/18 to 26/11/18, then I woke up on the 27/11/18 and felt slightly better then normal and woke up today in a foul mood, its currently 3pm and my mood is starting to pick up again,

Which makes it very difficult to plan your life, attend appointments, or even feel like your getting help.

I have spoke to NHS during my really down mood this morning and they refused to allow me to speak to a triage nurse, which was so poor, thats how people end up killing themselves when they reach out for support and get rejected.
 
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