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Thread: New member

  1. #1
    Join Date
    Jul 2011
    Location
    Newcastle, UK
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    Default New member

    Hi

    I'm a new member but I received my diagnosis several years ago. I'm actually diagnosed with tic disorder NOS, but I think I actually have Tourette syndrome because I didn't realise that things like sniffing and throat clearing counted as phonic tics when I was being assessed, so I said I only had motor tics. The neurologist I saw wasn't a specialist and didn't really give me much information other than to say that unless my tics were disabling, there was no point giving me medication because the side effects would outweigh the benefits. I am hugely sensitive to the side effects of any medication anyway so I agreed with him. My motor tics can be really painful at times (eyestrain and headaches are common occurrences, and I've pulled muscles in my calves, shoulders and abdomen several times too) but I have grown adept at hiding them and I don't have any complex tics, so I don't mind leaving them untreated.

    The problem is the co-morbid difficulties. I've had OCD since I was tiny, panic attacks, depression, sensory oversensitivities, anorexia (which has been biologically linked to Asperger syndrome and OCD, so I wouldn't be surprised if it were linked to Tourettes too), social difficulties (I share many traits with people who have Aspergers, but I can read emotions/faces very well and the diagnosis doesn't quite fit), variable cognitive function (my attention span and concentration are dreadful) and a myriad of other problems that I'm sure I could list if I stopped to think about it for more than five minutes. I've been diagnosed, misdiagnosed and rediagnosed and my current list is something like mixed anxiety and depression, OCD, PTSD and atypical anorexia. I used to self harm, although I have recovered from both that and the anorexia (by myself without hospitalisation, I would add. Go me ).

    Whenever I've sought help in the past I've just had various professionals trying to find something wrong with my parents. Obviously they weren't perfect – who is?! – but they didn't cause my problems. I was violently assaulted as an older teenager (hence the PTSD), but I've been aware of my problems since I was about four, so that just complicated matters rather than being some traumatic root cause. I have been through years of therapy and learnt every coping mechanism under the sun (okay, exaggeration, but that's what it feels like!) and I'm still struggling to function. I have a job and I keep myself healthy, but my mood and anxiety keep tripping me up. I don't seem to be able to cope with as much stress as most people can without having a minor breakdown.

    Ideally I wish I could have support from the mental health professionals that acknowledged that my problems were innate/neurological rather than neurotic, and then I could get some help with coping with them rather than pointless attempts to cure them (I wish such a thing existed, but searching endlessly through my childhood is not it!). But in the meantime I would just love to have people to talk to who understand something of what I mean.

    I'm usually a bit calmer than I sound in this post, I've just started a new job and it's thrown me off balance a bit.

    Katie
    Last edited by poigirl; July 1, 2011 at 05:08 PM.

  2. #2
    Join Date
    Sep 2005
    Location
    Ottawa, Canada
    Posts
    790

    Default Re: New member

    Welcome to TSFC Forums, poigirl.

    It might be helpful for you to specifically seek therapists with expertise in OCD, anxiety disorders, and depression with an emphasis on cognitive behavior therapy (CBT). It sounds to me like you are seeking help in managing your symptoms rather than "insight" into their possible or theoretical symptoms, and that's precisely what CBT is designed to do.

    We have some articles here at TSFC on all of these issues and will be adding more as we get time. Perhaps you can start by browsing those specific forums here.

  3. #3
    Join Date
    Jul 2011
    Location
    Newcastle, UK
    Posts
    3

    Default Re: New member

    Thanks for the speedy reply

    I've had both cognitive behavioural therapy and mindfulness training before, and they are both very helpful. I suppose the problem is that although I can cope with my OCD/panic attacks, I wish they were less present in my life. I get really tired of fighting to stay stable all the time. I do get on with CBT and it would probably be worth me getting a bit of a top up, but I'm in the UK and we have the waiting lists of doom here!

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: New member

    Hello Katie and welcome to the Forum.

    unless my tics were disabling, there was no point giving me medication because the side effects would outweigh the benefits. I am hugely sensitive to the side effects of any medication anyway

    Undertanding your sensitivity to medication, you may be interested in knowing that if you choose to seek treatment for the co-morbid conditions, and if medications are offered, that conditions such as anxiety, depression, and OCD are more easily treated with medications than are the tics, and the newer classes of medications like the SSRI/SNRI's are better tolerated than the older groups of meds used for these diagnoses.

    I've just started a new job and it's thrown me off balance a bit.
    Congratulations on the new job. As we all have experienced, starting a new job is certainly stressful and can increase anxiety. People with Tourette are often more affected by stress than the general population, so don't be too hard on yourself. It may help if you can take a few time out's during the work day, to be in a quiet safe space where you can express any tic energy that might have built up, or just collect your thoughts.

    I'm in the UK and we have the waiting lists of doom here!
    Is it possible to consult a private therapist in the UK, if you choose to do so and pay or is that not possible with the available system?

  5. #5
    Join Date
    Mar 2008
    Location
    Sydney, Australia
    Age
    45
    Posts
    227

    Default Re: New member

    Welcome to the forum, poigirl.

  6. #6
    Join Date
    Jul 2011
    Location
    Newcastle, UK
    Posts
    3

    Default Re: New member

    Hi Steve I'm going to hope I'm doing this quoting thing right...

    Quote Originally Posted by Steve View Post
    Undertanding your sensitivity to medication, you may be interested in knowing that if you choose to seek treatment for the co-morbid conditions, and if medications are offered, that conditions such as anxiety, depression, and OCD are more easily treated with medications than are the tics, and the newer classes of medications like the SSRI/SNRI's are better tolerated than the older groups of meds used for these diagnoses.
    Unfortunately I have tried many different SSRIs/SNRIs in the past, and react badly to them. They make me suicidal and/or manic, self destructive, impulsive and they make my tics a lot worse! When I was coming off of venlafaxine four years ago I felt like one big tic for about six months afterwards :/ SSRIs and I do not get on, sadly. I wish they did help me, it would be easier than having to rely purely on therapeutic techniques!

    Quote Originally Posted by Steve View Post
    Is it possible to consult a private therapist in the UK, if you choose to do so and pay or is that not possible with the available system?
    It IS possible, but I just don't have the money. When I was in recovery from anorexia I had to find a private therapist for various reasons due to NHS limitations, and I managed to pay her out of my disability benefits. But now I'm living on my own, on a low wage, working 20 hours a week, and I need that money for food and my rent! I have had a look around at local charities which provide counselling though, and I have a few options there.

    Hi to SpiderThug too

  7. #7
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: New member

    Sory to hear about the difficulties you had with meds, in which case you are quite right in seeking alternatives.

    Is there any specific information we can help you find on the Forum?

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