Undiagnosed and rare conditions
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Feel undiagnosed and something mysterious happen to me

adibit1982adibit1982 Member Posts: 6 Listener
Hello I want to share something that I have been through and I want to know if someone relate to this beacuse I feel lonely on this situation so maybe someone will help me.
I suffered something like 5 years from very tough tics that seem to me different from the tics that I know or saw in the net and like this.
The tics express like someone grabbing my head backwards and beacuse of this I have little jerk in my neck sometimes it can be brutal, all my face is distorted, I can say that the worst tics comes in attacks that can last something like half an hour, i have tics like hand shaking or hand throwing away rapidly or fingers distortions its very scary especially when its happen in public this is the part of the tics.
The second part is the emotional or physical I feel big pressure in my whole skull, very stiff shoulder and neck very sharp pressure in my chest,  I feel a lot of anxiety and fearful emotions not always with reason it can come by itself and exerebate the tics to the level that I am out of touch almost.
When it happens it could be a lot of agonizing thoughts like want to suicide beacuse the suffering is big and all the situation is very scary.
I was at psychological consulting with no help I was and still have at neurological consulting and they said it is tics disorder or tourette's and gave me medicine that didn't help.
I feel very hopeless sometimes because I dont know what can help me so I try to share here and maybe the crowd wisdom will help me.
Thank you very much.

Replies

  • Tori_ScopeTori_Scope Scope community team Posts: 3,722 Disability Gamechanger
    Hello @adibit1982, and welcome to the community! I'm glad you've joined us, and I hope that you'll find our members kind and supportive,

    I thought I'd let you know that I've moved your post over to the Undiagnosed and Rare Conditions category of the community, as this will make it easier for people to find and answer your post.

    I'm sorry to hear that you feel hopeless at the moment, so I hope the collective wisdom of our members will be able to give you some hope :) 
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  • adibit1982adibit1982 Member Posts: 6 Listener
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @adibit1982! How are you doing today?

    Great to have you with us. :)
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  • janer1967janer1967 Community champion Posts: 8,508 Disability Gamechanger
    Hi and welcome, glad you have joined us on the community
    I am sorry to hear about your symptoms and condition and that you are not getting much support.

    I would try and speak to your GP or consultant agsin and tell them you are unable to cope with this and is there anything more they can do for you

    Hope fully some other members may be able to share similar conditions with you
  • male45male45 Member Posts: 313 Pioneering
    hi @adibit1982
    How are you doing today? You say you were given medication which you say didn't help. Have you stopped taking this medication?
    I cannot relate to your illness but will be here to support you if you thib
    The community here are all good people who will be there for you 
     Do take care and let us know how you are
    Best wishes

    Best Wishes 
  • adibit1982adibit1982 Member Posts: 6 Listener
    Hey.
    Thanks for your comment.
    I already have been at neurologist and they told me its tics disorder and he gave me medication but I feel sometimes it is something deeper than that I dont know how to explain it beacuse sometimes I feel so weak and like I dont have control in my body at all like someone else control  it.
  • alieshiaalieshia Community champion Posts: 73 Courageous
    It would be my recommendation to ask for a 2nd opinion from neurology. Your GP can refer you to a different Dr or hospital entirely. You could even research one you think sounds like they might know the sort of issues you're having and request to be specifically referred to them. Neurology is a minefield tbh because the brain is such a complex organ that Dr's don't still fully understand. I was initially told my neuro condition was psychological. When the correct testing was done it turned out the pressure in my skull was too high. 

    Are your suicidal thoughts happening when the tics happen or is this all the time? I can signpost you to help if you would like to talk to someone independent?
  • adibit1982adibit1982 Member Posts: 6 Listener
    Yes my suicidal thoughts come just in my worst tics and feelings.
    Thank you
  • Tori_ScopeTori_Scope Scope community team Posts: 3,722 Disability Gamechanger
    Hi again @adibit1982!

    I'm concerned by your mention of suicide, and want to support you.

    You can call Samaritians any time on 116 123 to be in touch with a crisis volunteer. Also, SHOUT have a similar service that provides mental health support over text. If you text SHOUT to 85258, a crisis volunteer will be in touch. 

    MIND also have guidance on how to manage suicidal thoughts, and you can find psychological services that are available to you on the NHS website.

    If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.

    I understand that you've said your suicidal thoughts mainly arise when you're experiencing your worst tics, so I agree with @alieshia that it might be a good idea to go back to your GP to let them know that you are struggling and may benefit from speaking to a different neurologist. 

    We're all here to support you, and you deserve to get the help you need. 
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  • male45male45 Member Posts: 313 Pioneering
    @adbit1982
    How are you feeling tonight how are the tics been since you last posted
    Could you tell us a bit more about yourself, for example if you live alone have family or friends you call on for support whenever you need help with anything?
    You said you suicide thoughts are worse when the tics are. Does this also mean that once they have eased then your thoughts of suicide go away?
    If you feel talking about them daybor night you can always post here, you may not get an immediate response but you will get support.
    So one poster has said you can contact a number of helplines where you can find support.
    Samaritan volunteers are very good. You can phone them on 116123 or email them.at [email protected] 24/7 all year round . They also have an app which you can download..its a self help app.
    You can find all information on samaritans website : www.samaritans.org
    Please do keep in touch to let us know how you are doing we will be here for you.  Please remember...
    You are not alone

    Best Wishes 
  • adibit1982adibit1982 Member Posts: 6 Listener
    Thanks you for your support.
    I am ok right now.
    This situation is very fluctuating so sometimes it's better sometimes it's less.
    My goal is to treat the tics by conservative treatment beacuse I dont want to full myself with medication that make me zombie.
    I have two dougther and wife and I am working I am physical therapist.
  • Cher_ScopeCher_Scope Scope community team Posts: 3,124 Disability Gamechanger
    Hi @adibit1982

    I'm glad you are doing ok.  I understand your concerns about wanting to avoid medication but make sure to seek health advice if things get too much.  

    It sounds like you have a lovely little family there.  What kind of physical therapy do you do?
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  • male45male45 Member Posts: 313 Pioneering
    Gd day @adibit1982
    As Cher_Scope says you seem to have a lovely family.
    I'm sure they support you well. 
    So you're a PT..do you confide in any of your work colleagues if so what support or help do you get from them or from work?
    Have you sussed out any support networks for people who suffer with tics?
    As advised before by Cher_Scope please do not avoid medication if the medication you have at present makes you a zombie would you not return to your dr and mention this to him or her and try to get a different med?
    Sometimes just taking a medication helps if for a little while so please rethink about taking your med if only for a short period when the tics become worse.
    Come on back and let us know how your day was 
    Best wishes 
    Best Wishes 
  • male45male45 Member Posts: 313 Pioneering
    @adibit1982
    Good day to you.
    Well wasn't that heat last night something.
    How was your night did you sleep well?
    I dozed off for a few hours then got up and watched TV.. today I'm watching decorators paint my kitchen...glad its them because its quite humid at the moment.
    So what hobbies do you have..do u go out socialising with the family . What do u like to do when finished work.  
    I hope your day has been a good one..so drop by and let us know how you are 
    Chat soon

    Best Wishes 
  • Tori_ScopeTori_Scope Scope community team Posts: 3,722 Disability Gamechanger
    Hi @adibit1982 :) I just wanted to check-in to see how you've been getting on since you last posted here? 
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  • adibit1982adibit1982 Member Posts: 6 Listener
    Hey teri.
    Thank you about your support.
    I feel much better than I did.
    The tics is something that always there and there charactaristic is to come and go so I need to learn how to handle and live with them.
  • Tori_ScopeTori_Scope Scope community team Posts: 3,722 Disability Gamechanger
    No problem @adibit1982. I'm really glad you're feeling much better than you did :) I hope that you can continue to find ways to handle and live with them. 

    Please let us know if we can give you any more support at all 
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