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Hi I’m new here

these4wallsthese4walls Posts: 4Member Listener
its funny but I’ve only just realised I have a disability. Despite having this illness for over 20 years. I have a phobia (severe), been diagnosed with agoraphobia which I believe it is partly, but mainly cleithrophobia, fear of being trapped, with panic disorder, panic attacks. Which over the years has lead to night terrors. I gave up my job over 20 years ago as I couldn’t cope with the situation, I worked in a small office with bars on the windows and a big metal door. I thought at the time that this would be a temporary thing and that I’d get better and then find another job. How wrong I was.

My life has to run around my illness, it affects every day. I cannot travel on public transport as I feel trapped. I can drive but have to plan my journey as I cannot get stuck in traffic. I’m always tired due to nightly night terrors, panic attacks every night, heart racing adrenaline pumping, leaving me drained in the mornings. I’ve started sleepwalking and have woken finding myself at the top of the stairs and trying to escape out of my window, amongst other places. Anyway I could go on and on but it helps a little to realise I ‘belong’ to a group / category of people if that makes sense. I’ve had 3 lots of cbt and been given antidepressants over the years. I couldn’t take the ads as they made me feel out of control and almost psychotic. So I just don’t bother going to my gp any more as I don’t know how they can help me. Thanks for reading if you’ve made it this far.

Replies

  • susan48susan48 Posts: 2,206Member Disability Gamechanger
    edited August 2018
    @these4walls, nice to meet you.

    This disability must be very difficult for you. Maybe a chat with your gp to see if they could refer you to a psychiatrist to look at a suitable medication. Also another referral to psychology, maybe try something different than CBT. Iv had various lots of CBT but don’t feel it helps me.

    Its good to talk, so they say  :)
  • these4wallsthese4walls Posts: 4Member Listener
    Hi Susan thank you for replying. I think that’s what I’m going to do. The trouble is, if an appt is in a different building, I struggle with doors and escape routes with places I don’t know. But hopefully it might be in the doctors surgery which I’m ok with as I know there are several exits in there.
    But I’ve had enough so I’m going to try 🙂
  • EmmaBEmmaB Posts: 197Member Pioneering
    Hi @these4walls  

    It sounds like you are currently living a very restrictive existence but it also sounds like you would like to find a way of 'escaping' from this existence.  You've tried to source some help but it doesn't appear to have been very effective so far...

    I'm an online counsellor and on reading your post I'm wondering where your fear of being trapped comes from and it's likely that that would be the focus of any therapy you might end up finding helpful.

    If the roots of the problem is some sort of traumatic event [which you might have difficulty remembering because that's the nature of trauma - it's not always easy to remember the details...] then you might find more specialised trauma therapy more helpful than 'just' talking therapy or CBT.  One possible route is EMDR which your GP should know about or if you have the money you could source privately.

    Peter Levine is a specialised in trauma and has written a very good book on 'Healing Trauma' which you might find interesting, it is billed as a self help book but be aware that if the exercises in the book bring up too much 'stuff' for you then it is definitely better to do this work with a therapist who works with trauma.  

    I hope that helps and good luck, your situation made me remember a quote from Peter Levine:  "Trauma is a fact of life, but it doesn't have to be a life sentence."

    Best wishes.

    Emma
  • susan48susan48 Posts: 2,206Member Disability Gamechanger
    @these4walls, I hope you get an appointment to talk it through with your GP.
    The referral, for me, has taken since March to come through. I was assessed by the mental health team at home then they had a meeting to discuss what way forward they thought was best.

    I had to go to a different place for another assessment which psychology, I’d never been there before and was unable to have someone with me so I got a taxi to the place but was very anxious, all the symptoms that goes with it, but I did it. so can you, I’m sure x
  • these4wallsthese4walls Posts: 4Member Listener
    Thanks, I’m going to call my gp surgery next week. I wouldn’t have known what to ask for so that’s really helpful. Do you have similar problems? Have you received help since your assessment?
  • these4wallsthese4walls Posts: 4Member Listener
    Thanks Emma
    there was an event that happened around 5 years before I started with this illness. I was in a car accident and temporarily trapped inside a car which seems like an obvious start to this. But someone in the past who I saw said that 5 years is too long for it to be that. 
    A limited existence is exactly it. This year my partner took my children on holiday and I stayed home alone, because I hate that they hadn’t been abroad and that their life was becoming limited because of me. There are so many things that they’ve missed out on because of me, it pains me to think about it. A few years ago I borrowed money to go and see 2 people who I thought could ‘cure’ me, they’ve been on the tv many times, it cost me a fortune (I don’t earn anything) and took me ages to pay back from my partners wage. I thought I’d be cured but it wasn’t to be. 
  • susan48susan48 Posts: 2,206Member Disability Gamechanger
    Thanks, I’m going to call my gp surgery next week. I wouldn’t have known what to ask for so that’s really helpful. Do you have similar problems? Have you received help since your assessment?
    Hi that’s a positive start. I have social anxiety and depression , insomnia also FND which can be very debilitating and isolating so I kind of understand how it feels.
    I have a psychiatrist appointment this week, my meds are not working. im still on the waiting list to see a psychologist. I hope my appointment this week gets my medication sorted.

    I read your message to Emma, I don’t agree with the people who say that 5 years is too long, not that I’m an expert! Iv had depression most of my life but the other stuff happen after numerous big life events, it resulted in a suicide attempt. 

    That was 3 years ago and the anxiety etc started after the attempt. Things happen and if your like me you carry on without actually dealing with things and it take 1 thing, no matter how small, to be the trigger.

    Thats just my opinion though @these4walls.
    Im here if you want to chat, might take me a while but I will eventually.

    Please let me know how your appointment goes
  • EmmaBEmmaB Posts: 197Member Pioneering
    Hi @these4walls

    I agree with @susan48 - just because your symptoms didn't start until 5 years after the accident it doesn't mean it wasn't the cause of the symptoms, often symptoms can be dormant for years then set off by a 'trigger' of some kind...  

    In fact the symptoms sounds extremely connected to the trauma you describe and if the people who said they'd 'cure' you [not a term I would use as a therapist] didn't deal with that trauma effectively then it would still continue to affect you.  As it does...

    You should be able to get EMDR or trauma focused therapy on the NHS, you might have to wait but it might just be the thing that helps you finally resolve the trauma you experienced all those years ago which is still affecting you now.  Please don't give up hope, you sound up for trying to do something and that is half the battle and you have strong motivating factors in terms of your children and partner.

    If you are interested in how the whole trauma reaction works this is a good video:



    Be interesting to hear what you think of it?

    Best wishes.

    Emma
      
  • blueboy87blueboy87 Posts: 69Member Courageous
    [email protected] something happened to me when I was 4 then when I was 19 I was staying with my sister when I woke up screaming it had happened to me for years just thought it was a nightmare my sister who is 9 years older than me asked me to tell her what my nightmare was about it was then I found out what happened to me at 4 I resented my parents for a while I felt they should have told me but to cut a long story short I have for the past 20 years had therapy medication which gets changed after a year or so as it no longer works I was diagnosed clinically depressed bi polar and borderline personality disorder .i totally understand where your coming from mh is something that doesn’t go away good luck for your future 😘
  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    Hi, I can understand and empathise where you are coming from as I am recovering from agoraphobia and panic disorder. I didnt know there is a fear of being trapped as I have that too. I say I have claustrophobia and agoraphobia as I cant stand being closed in or trapped as well as panicking when im outside and out of control. This came after a traumatic event where I was trapped and assaulted. The symptoms did not fully show up for a couple of years as I just shut down almost completely and got very little help. Its now almost 8 years later and I am still learning about it. I put in a self referral earlier this year again as I feel I reach a plateau and get stuck. I too live a very restricted lifestyle and not many understand that. Thanks for sharing.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • EmmaBEmmaB Posts: 197Member Pioneering
    @blueboy87 and @debbiedo49 - like @these4walls both of you have very identifiable events in your past which could be the origin of your current issues.

    I would recommend that you look into trauma focused therapy - either working through the body or by using EMDR which is recognised by NICE [which stipulates which treatments the NHS can use to treat people] as a treatment route for trauma.  

    Untreated trauma results in many symptoms including anxiety, panic, depression, PTSD, fibromyalgia, chronic pain, IBS [and the list goes on] and people are also misdiagnosed with conditions such as depression, anxiety, BPD, bipolar etc... 

    More and more is being learnt about the physiological effects of trauma and how this impacts on the body and mind.  The trouble is that many people don't know that there is effective treatment for trauma and psychiatrists still prefer to pin labels on people and dose them up which doesn't resolve the root of the trauma or alleviate the symptoms - this means people are left to suffer for decades - but even after decades it is possible to heal.  After such a long time that might be a scary proposition but if you want your life back it might be one you'd want to look into further?

    I hope you can all find out more about this online [the link above is a good starting point] and you could also google EMDR, and then perhaps find someone who knows about this in your area - your GP should know about EMDR but the key word here is should... you might have to teach them which tends to be the case when you have something they are not familiar with I find!  

    Best wishes.

    Emma
  • blueboy87blueboy87 Posts: 69Member Courageous
    Hi Emma I’ve had counciling and therapy both took me back to my childhood which caused me to lash out my problem is from being a 4 year child and I came from a loving family so my upbringing has nothing to do with it 
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Welcome.

    The official definition for Agoraphobia is "A fear of panic attacks caused by the environment" and actually includes such phobia's as Claustrophobia. I suspect they stopped naming individual problems and drafted an umbrella condition to cover any new ones, lol!

    Sufferers of Agoraphobia also suffer or develop Anxiety and sometimes Paranoia.

    Panic attacks are considered a condition in their own right.

    I hope you find a better way of dealing with your issues and manage to cope going forward.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    I agree with you Emma that could work for me. I have other health issues that are probably a result of this issue.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • EmmaBEmmaB Posts: 197Member Pioneering
    Good luck @debbiedo49 the basic idea is that the body keeps the score - which is the name of another good book on this issue!


  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    So you just ask for this help?
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • EmmaBEmmaB Posts: 197Member Pioneering
    Hi @debbiedo49  

    A GP should be able to refer someone for trauma focused therapy such as EMDR.  It's also possible to find therapists that work privately who are knowledgeable about working with trauma.  The key is that it seems that when it comes to trauma [which can take all sorts of forms and lead to all sorts of symptoms] that working through the body is considered to be more effective than cognitive or talking based therapy.  The main stumbling block is having a GP who prefers to think that drugs or CBT are the answer...
  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    I’m waiting on an appointment with the m h team
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
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