Firstly I'd like to apologise for posting here cos I don't believe my pdoc who says I have psychotic depression, but I didn't know who else to ask.

Basically I stopped my meds (antidepressant & antipsychotic) a few weeks ago for a number of reasons, but partly cos I thought I'd imagined or made up the voices. Anyway since I stopped the meds the voices have come back but they don't really bother me cos at least now I know I didn't make them up (unless I still am making it up?!) But I've also noticed this background 'noise' in my head which I don't know if it was there before the meds or not. It's really hard to describe but it's not a sound or a load of voices in the distance. It doesn't bother me so much in the background, but when it gets more intense/'louder', I can't think at the same time. I physically cannot think at the same moment as this 'noise' whatever it is, and it lasts a minute or so at a time, but multiple times a day. Anyway it's kinda freaking me out and I can't really explain it to myself or to my pdoc who I will see in June

Does this make any sense? Does anyone understand what I'm experiencing and have any insight into it? I'm just really confused about it all and need to have it make sense.

*Willow*

[EmptyReflection]

What you've just described is probably what should be relayed to the pdoc, imo.

I've got a current of sound that varies, both in frequency and intensity. Often it's either just a stream of random tunes, or a single entity commenting on various mistakes I'm making. Rarely, I get what I can only describe as "grey-outs", where there's a burst of "pink-noise"-type interference in my hearing, sight and thinking. It only ever lasts for a few moments, but it seems like all my sensory input has frozen in time, except for that. It's unsettling, certainly.

Originally Posted by EmptyReflection

What you've just described is probably what should be relayed to the pdoc, imo.

I've got a current of sound that varies, both in frequency and intensity. Often it's either just a stream of random tunes, or a single entity commenting on various mistakes I'm making. Rarely, I get what I can only describe as "grey-outs", where there's a burst of "pink-noise"-type interference in my hearing, sight and thinking. It only ever lasts for a few moments, but it seems like all my sensory input has frozen in time, except for that. It's unsettling, certainly.

Thank you for your reply EmptyReflection

I'm certainly going to try to explain it to my pdoc when I see her, but it's a bit complicated. Basically she is the pdoc I saw for a yr when I was living with my parents, when I first started experiencing voices and weird thoughts, and she didn't believe me. She wrote in my notes that she thought it was my way of saying that I didn't want to go back to Uni, so it's not just my perception; she really didn't believe me. I've since seen another pdoc in Uni who DID believe me and prescribed meds, which I've since stopped, after leaving uni & returning home to my parents. I guess I'm just more worried than I would normally be about mentioning this to a pdoc cos I don't think she will believe me again. (I live in a big city so you'd think I could see another pdoc on the NHS but apparently not!)

I'm just really confused by it all and that freaks me out. I don't like feeling like I can't trust what's going on in my own head

It seems a bit like this 'pink noise' you were describing, in that everything seems to stop for a moment. Like normally the noise is barely there but in my head, but then it feels like it's EVERYWHERE then, both inside and outside of my head. And I've tried forcing myself to think during it, but I can't, which scares me more than the voices cos at least I can think in my head with them around and I can respond to them in my head.

I don't know, the more I think about it, the more confused I get, and the more confused and uncertain I get, the more I feel genuinely scared of/for myself.

Thanks again for your reply

*Willow*

Oh I forgot to ask EmptyReflection, did you mention to your pdoc about your 'pink noise' experiences? Did they have any idea what it could be?

Thanks again!

*Willow*

[EmptyReflection]

Originally Posted by WeepingWillow23

Oh I forgot to ask EmptyReflection, did you mention to your pdoc about your 'pink noise' experiences? Did they have any idea what it could be?

Thanks again!

*Willow*

I stopped seeing a pdoc years ago, for my own reasons. At that time, I still wasn't particularly familiar (or comfortable) with the diagnosis I was given, and wasn't really sure what to report. I guess I'm still not sure, even if I were seeing one.

[Buddha443556]

When I had NMS, I had buzzing in my ears that was so loud I couldn't hear people standing right in front of me. NMS made my blood pressure unsteady and on the high end I would get that buzzing. Maybe you need you blood pressure monitored?

I could be discontinuation of the medication, none of them are easy to quit.

It might be a good idea to check you environment too. Something like you refrigerator, air conditioning and even lights can make a high pitch noise that causes a psychotic response. Turn off one thing at a time for 10 to 15 minutes and see if there's an improvement. See if there is a particular spot where the noise is worse and if nothing else avoid that spot. I had a fan with a high pitch noise and every time I paced by it I would hear something-- turning it off solved the problem.

I know how uneasy and unsure of yourself psychosis can make you feel. It gets better with time as you learn to cope.

A work in progress ... VOICES: Coping, Dealing and Controlling

[costello]

Originally Posted by Buddha443556

When I had NMS, I had buzzing in my ears that was so loud I couldn't hear people standing right in front of me. NMS made my blood pressure unsteady and on the high end I would get that buzzing. Maybe you need you blood pressure monitored?

Was this a form of tinnitus? I've had tinnitus my entire life. Literally since I was a small child. All day, every day, at all times, I hear buzzing in my ears. Like an insect whining.

A few years ago I went on a forum about tinnitus, and I learned that some people, who develop tinnitus suddenly later in life, actually commit suicide because of it. I'm so used to it, I can't imagine what life would be like if it were gone.

My dad also suffered from tinnitus his entire life. He was adopted as an infant. Some of his traits and characteristics, which he later learned were inherited, were upsetting to his adoptive family. When he was a teen, he told his sister-in-law about the buzzing in his ears. She said it was a sign he was crazy and needed to see a psychiatrist!

[pachyderm]

I think the "noise" that most of us talk about is what seems to be a background of thoughts that essentially are opposing us. Sometimes they are heard as actual voices of people, sometimes not. I think they are memories of actual people, of actual ways in which we were treated -- but many mental health people simply want to (try to) suppress them, not to understand them. And that generally does not work. Many such people are uncomfortable dealing with things that they do not understand, have not been trained to comprehend, so they want to "make" them go away. In my experience that is not a good way to deal with the "noise". If you get an idea that it may be a reflection of something (constant criticism) that really happened a long time ago, it can be easier to understand and to deal with.

[Buddha443556]

Originally Posted by costello

Was this a form of tinnitus? I've had tinnitus my entire life. Literally since I was a small child. All day, every day, at all times, I hear buzzing in my ears. Like an insect whining.

Yep, it can get to the point it drowns out everything else. It can be another source of auditory stimulus someone with psychosis doesn't need.

Thanks for your replies guys!

@EmptyReflection - Yeah I understand not being sure of your diagnosis. I'm about ready to give up with pdocs myself but my parents would freak out, and they already worry too much.

@Buddha443556 - Thanks for your suggestions. I'm pretty sure it's not high blood pressure cos it's not a whooshing or buzzing sound, and it's not tinnitus cos I've had that a few times before and that was different. I hadn't thought about my meds causing it, but then I did quit them cold turkey... I'll try and take note of my surroundings when it happens but it's happened both when I'm at home and when I'm out & about, so I'm not sure I'll find anything. And thanks for that link; I'll def check it out! Atm I either get confused thinking about it, and then scared, or I just ignore it completely, pretending it doesn't exist...which probably isn't very healthy.

@pachyderm - yeah I think it's definitely a good idea to try and understand what is going on as that takes away most of the fear in my experience. Like I know that the voices that I hear are just telling me negative things that I already believe about myself or have been called in the past, and that def makes it easier to cope with.

[Twisti]

Im sorry i cant help you with "that" type of noise, I only hear voices not that type of noise...however I think i know something that may help you a little bit...and im a bit short on time so im sorry if this is a repeat of something someone may have already mentioned as i didnt read all of the above replies...

Get a small notebook that you can carry with you all of the time. (and a pen) Make note of the times it happens and scale it from 0 (being no noise at all) to 10 (being so distracting you cant freaking do or think anything with it going on-kinda like they do at a hospital with the pain scale) and describe what you are doing at the time and whatever other details you may think would be helpful for your doc to see...I find this to be extreamly (sp?) helpful to myself and my therpist in many many ways and its very easy to do. It becomes habit quickly. You can compair when it seems to be worse and at what times, better etc etc....Blessings to you. Hope that helps a little.

Thanks for your response Twisti, especially when you were in a rush. It's much appreciated

And thanks for the suggestion: I'll def try that.

*Willow*

I've been filling out my disability benefit forms today and they've been stressing me out. I hate having to write it all out cos it just sounds so awful. Presumably the stress is why the noise has been worse today

*Willow*

[costello]

Do you have a friend, family member, or case manager who can take the burden off you? Fill out the paperwork for you or at least be there with you?

Originally Posted by costello

Do you have a friend, family member, or case manager who can take the burden off you? Fill out the paperwork for you or at least be there with you?

My Mum said she'd help me fill it out...but she keeps putting it off. The form stresses me out and I think I'll feel better when it's done. Though then I'll probably just start stressing about the medical! lol My Mum knows how much these forms stress me out but she's busy and not well so... I don't know. I don't like talking about things anyway and I don't want to push the issue so I guess I'll just have to do it myself.

*Willow*

[EmptyReflection]

I can assure you, having gone through similar volumes of paperwork myself - once it's all done and over with, you'll feel a ton better. It's like a weight off your shoulders.

Thanks EmptyReflection! Yeah I think I'll feel so much better when it's finished with too, which is why I guess I'm so annoyed that my Mum won't help me yet. She keeps saying she'll help but then keeps putting it off

Yeah once it's in then it's just the medical to stress about!! lol

*Willow*

[mgran]

I have a housing officer who helps me fill in forms. There must be a patient advocate or helper who can support you through this? I know you're in the US, and services aren't so good there, but perhaps someone in the US, or your state, might have an idea? It's unfair to expect someone with a disability exacerbated by stress to do something so stressful.

Let me know if anyone helps you... if you're still struggling, let me know what county you're in, and I'll try to do some research of my own. I don't need your full address, but state and county should be enough to track down some patient support groups.

@mgran - thanks for your reply. I'm actually in the UK not US, but thanks for the offer of support. In the end I did it myself. My Mum also had a look through it for me today and added some more stuff. Gonna photocopy it (for when they 'lose' it!) and post it tomorrow. I'm just relieved that it's done with for now.

I know, I think it's terrible that they expect people who get so easily stressed out & overwhelmed to fill out these forms. And it's only gonna get worse here cos the new govt wants everyone to renew their disability forms more often to ensure that they're still entitled to benefits. I get why, but the thought of having to go through this all again in a few months is horrendous

We have Citizens Advice Bureaus here which can help with filling in these types of forms - they helped me apply for Disability Living Allowance in the beginning - but I got so ashamed telling this complete stranger all of my problems so she could fill out the form for me Though it stresses me out doing it myself, at least I don't have to go through THAT again!

Anyway, thanks for your support mgran

*Willow*

[mgran]

Hi Willow,
make sure that as well as keeping a back up copy, you send your form recorded delivery.

As you're in the UK you can ask your psychiatric nurse (you should have one through your GP) put you in touch with local services... Here is a fairly comprehensive link to patient groups for all sorts of issues. You might have some extra support if you're under a certain age and still living at home.

You should be able to get a patient advocate, possibly be alocated a case worker from something like the "short term intervention team", (pnurse should help with that)as well as a housing officer, and local advocates and support workers from MIND.

If your GP is unforthcoming or unhelpful, contact MIND who have stacks of information about the services available in your area.

As an example of what you can still get for support, even under the current government, these are the services I was able to access.
Short term intervention team, who allocated me a case worker who came out at least once a week to check on me, helped me in various practical ways by getting people in to tidy my house, clean up my garden. He fixed some of my furniture, including broken bed. Took away bags of rubbish that I'd been unable to dispose of when I couldn't leave the house. Put up shelves, etc etc.

Housing team, allocated me a support worker who filled in all my forms, helped me access benefits I hadn't been aware of (like lower rate disability living allowance and travel expenses), helped me keep my house by helping me get on top of my bills and other difficulties.

Two local groups who's remits include confidence building through access to social activities, volunteer work, training courses, and excercise.

A free bus pass, since I'm not allowed to drive with my diagnoses and medication regime.

They also helped me access help for my son who suffers from aspergers, and accompanied me to meetings at school, when being examined by DHS doctors, etc.

All this really helped, and I accessed it in the first case because my doctor sorted me out with a mental health nurse, who, in conjunction with my psychiatrist got the ball rolling.

You should be able to access something similar if you live in the UK...

First stop, GP, then psychiatric nurse, then psychiatrist, and if they don't help, then go to MIND.

[mgran]

Hey Willow, try the following websites for help.
www.rethink.org/ You can put your post code in and it will bring you up a link of services near where you are.
Mind is also very good. I'm going to a "money day" that they're organising in our area, to help me budget and hopefully not give in to the crazy "give it all away, spend what's left" bug that I've had before. http://www.mind.org.uk/ Again, if you type in your post code they'll bring information up that can help you.

Wow mgran! Thanks! I had NO IDEA that there was so much help available!

My GP is lovely and is actually chasing up an urgent pdoc appt for me cos I can't be bothered. I came home from Uni at the end of March when my Uni pdoc rang my home GP to sort out an urgent appt for me with a pdoc at home (I've left Uni now and live too far away to keep seeing Uni pdoc unfortunately). Unfortunately the local mental health team are cr@p and my 'urgent' appt is the middle of June with the pdoc I saw before who said I was making up hearing voices!! Mum went bananas & rang the GP and now he is trying to get me something sooner, espec cos I stopped my meds Anyway until I get a pdoc, I can't get a CPN...

...not that I'm sure I want a psych nurse tbh. The ones I've had in the past have been really mean. I met several at the crisis unit a few years ago and they all shouted at me for being "rude" and not answering them when I was practically catatonic! And threatening me with sectioning if I didn't do what they wanted me to, then telling me that I was never ill enough for sectioning and so should 'pull myself together'! Needless to say I would be dubious about getting another CPN.

*****

On another note, my Mum is hassling me about my lack of meds and I don't know what to do. I don't think she understands why I stopped them (but then I'm not 100% sure on it myself at times). Basically I was made to take meds due to the course I was on and 'fitness to practice' issues. Now I'm no longer on that course so I get to choose for myself.

My problem with my meds (antidepressant & antipsychotic) was:
- the antidepressant didn't work, at all
- I'm not sure I need an antipsychotic - when I don't hear the voices, I kind of convince myself that they're not really there and that I'm making a fuss out of nothing. But now they're back again so I know that they're there, but they're not really a big deal...If I go back on the antipsychotic I know that I'll just convince myself that the voices aren't real again and want to come off it again
- I don't really believe that I deserve to get better and so think that I shouldn't take meds just in case they do work. I think that feeling like this is my punishment for being a bad person - my Mum has serious issues with this and just thinks i'm being silly but I genuinely feel like this
- one or both of my meds is causing weight gain, to the point where I've had enough and am feeling completely out of control (yes I know, eat healthily and exercise but I really don't have the energy for that - if I stop my meds, my appetite will go away and I should go back to normal)

Part of me feels that I've made the decision and should live with the consequences, whatever they may be. But then another part of me feels bad for making my parents worry and thinks I should be a 'good girl' and take the meds regardless of how I feel...

Aargh! I really hate feeling this confused and all over the place. Before all this I used to be a competent, logical person and now I can't even trust my own brain

Anyway, just ranting. Ignore me.

*Willow*

[mgran]

Willow, maybe your Mum should get hold of a copy of this book. You can get it off British Amazon too, but if you check this link you can have a look inside the book. It's called "I'm not sick, I don't need help," and offers an explanation as to why some people with schizophrenic disorders often believe there's nothing wrong with them.

http://www.amazon.com/not-sick-dont-.../dp/0967718929

I'm sorry your Mum is annoyed with you... parental pressure can make things worse.

Thanks for the link mgran; I'll check it out.

Originally Posted by mgran

I'm sorry your Mum is annoyed with you... parental pressure can make things worse.

I get why she's frustrated. I frustrate myself too

*Willow*

[mgran]

Don't put more pressure on yourself though. You may be frustrated by certain things about yourself, but those things are peripheral... they are your illness, not you.

Six to eight months ago I could barely leave the house, couldn't take public transport, couldn't shop, clean up, couldn't even put the bins out regularly. I lived on takeaways, and only went out, if at all, when it was dark so nobody could see me putting out the bins. I was seeing things, hearing things, most horribly believing things that made me wretched. When the meds started to work I got really depressed about how badly I'd messed up my life. It took a while to get even half way back to normal. I wouldn't go so far as to say I'm normal now, but I can hold my life together, more or less, with support. The level of support I need is gradually decreasing, as I get out more, am volunteering, able to be with people, pursue my hobbies, etc etc. I can even go shopping in a supermarket, something hitherto impossible.

So, just be kind with yourself. Recovery might take a while, and it might be frustrating, but you're not too blame for your symptoms. People can and do recover. Give yourself time.