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Thread: Headaches are driving me crazy...

  1. #21
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    Wow Sarah what a lot you have going on. I cannot believe that you have had to consider selling your home - that is horrendous.

    I am not up to date with some of the medical things you are talking about but correct me if I am wrong - should they not have used contrast? Prof Graham is a world renowned EDS specialist - he was very good.He is retired but still does his job for the love of it. I think people rate the NHS as it is free but thats about it. Most GP's do not have a clue what is going on when it is more than a cold and luckily I have found a nice new one but he seems baffled with what is going on with me - he told me to come back to him if anything else happens but I feel I should wait till I go to London.

    I do work but only voluntary as I am never sure if I will be able to get in due to illness (I only do one day a week and they allow me to sit down). The other day however when I was there and I felt ok, I was on my feet most of the time - I got severe tachy and dizzy, stabbing pains from inside my head to my skull and then my knee subluxed - I think I overdone it! I have a child with autism too so things can be difficult. Some days are good (good for me) and some days I have to stay in bed. Mornings are extremely hard as my son is completely dependent on me and as soon as he goes I have to crash for an hour.

    I really do hope that it all goes well for you Sarah and that you can get the funding rather than selling up but it seems something has to be done. Thanks for the advice on FB and the other site . I do not know if I have a leak or just orthostatic headaches that may coincide with my pots?? But I shall take a look.

    Speak soon, Lou x x x

  2. #22
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    Have found the csfleak.org but cannot find the FB page :(

  3. #23
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    Heres the facebook link .. http://www.facebook.com/#!/groups/31002608753/
    You also seem to have so much going on!! Im glad you have found a GP that listens to you and were able to change.
    I can imagine your son really takes a lot of your energy too. Kids in general, whether grown up or small are exhausting although of course they are our lives.
    Have you discussed the possibility of a leak with anyone? Do you have some of the symptoms? it could be that they are orthostatic if they come and go but it could be that there is a leak too. Im not too 'up' on POTs really.
    Where is Prof Graham based? He seems great, Im glad you have found someone like him.
    I will have to read up on EHS and what it is all about, does it come on suddenly or something that one is born with?
    Ill have a look and see what the symptoms are.
    So glad to have met you
    Sarah

  4. #24
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    oopps meant to say EDS...sorry

  5. #25
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    Quote Originally Posted by hemyinspain View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Heres the facebook link .. http://www.facebook.com/#!/groups/31002608753/
    You also seem to have so much going on!! Im glad you have found a GP that listens to you and were able to change.
    I can imagine your son really takes a lot of your energy too. Kids in general, whether grown up or small are exhausting although of course they are our lives.
    Have you discussed the possibility of a leak with anyone? Do you have some of the symptoms? it could be that they are orthostatic if they come and go but it could be that there is a leak too. Im not too 'up' on POTs really.
    Where is Prof Graham based? He seems great, Im glad you have found someone like him.
    I will have to read up on EHS and what it is all about, does it come on suddenly or something that one is born with?
    Ill have a look and see what the symptoms are.
    So glad to have met you
    Sarah
    Hi Sarah

    Prof Graham is based at UCLH in London. He is EDS specialist. EDS is something you are born with and affects the connective tissues in your body - so basically everything I should think. I have read that its common to have CSF leak and CCSVI with EDS.

    I havent discussed the possibility of a leak as I was going to wait till I go to London. Are you still in the UK Sarah? Thanks for the link for FB.

    I do not know what the symptoms of a leak really are, I just came across a doc about orthostatic headaches and it came up. Where are the leaks?? In your spine,neck etc?? Not really much I can find on symptoms hence coming on here to see what other leakers think!

    Nice to have met you too and keep in touch x x

  6. #26
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    Hi peglegs
    So you have already been with UCLH so thats a start I guess.
    I have posted my story on leaker roll call thread. I was on the old Brain Talk page and that was shut down so I thought it would be a good idea to see if people want to start it up again on here.
    I so hope you get sorted out, there is nothing worse than living in so much pain all the time
    I read up on what you have, god you have/do suffer dont you. I really feel for you.
    I hope you get the answers you need
    Keep in touch
    Sarah

  7. #27
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    Try doing a search for "Postural Headaches".

  8. #28
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    Thanks Barque. I was at A and E the other night and they was talking about pressure (I thought they meant blood pressure in my head!) but think I may have this wrong and its cranial pressure??

  9. #29
    Distinguished Community Member Barque's Avatar
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    Red face

    Right.

    I know, in the past, I've had things going on, pains, wierd feelings here or there, and if I just changed the way I was sitting or laying or standing whatever what was going on changed as well. Just tried it a few times to see if it helped and most of the time it did.

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