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Will I ever stop being scared?

Posted , 4 users are following.

tracy43395
tracy43395

I spend my life waiting for the next attack. Every little flash of light or dizzy spell sends me running to my dark, quiet bedroom. I have no life.

0 likes, 7 replies

7 Replies

  • Kermodesmum
    Kermodesmum tracy43395

    Posted

    Don't be scared, life is too precious to let it pass you by in a darkened room. I do know how you feel........

    Speak to your GP openly and honestly , tell them how your life is and what it is turning you into.

    I spent years like this, trying new drugs/combination of drugs AND giving each new drug a fair chance of at least 6 months.

    I have now found the right combination of Propranolol x2 per day and a very low dose (10mg) Amitriptyline 1x nightly. This combined with avoiding my triggers, food, alcohol and stress work!

    After 5 years i seldom have a full blown attack.

    Stay positive

    Kate

    • tracy43395
      tracy43395 Kermodesmum

      Posted

      I have actually been on that exact regime for 10 years but it has suddenly stopped working. I have been trying different meds but none have worked and left me with spasms, panic attacks etc. My go is wonderful and is constantly trying new things.

  • StevenRose
    StevenRose tracy43395

    Posted

    Hi Tracy,

    That sounds so awful what you have, and I can only imagine how bad your life is.

    Of course we are all sufferers on here in some way or another, but yours sound particularly bad.

    First thing I want to ask you, are you under a Neurologist for your condition? If not then you need to get an urgent referral to one via your GP, you need to get SOME quality of life at least and any Dr who cant see that should not be a Dr at all.

    Let me know what you have done so far and then see where we go from there. I can offer different suggestions Tracy.

    Take care and best wishes

    • tracy43395
      tracy43395 StevenRose

      Posted

      I have 2 neurologists and my go is fantastic. It frustrates him he isn't helping, it isn't from lack of trying. I avoid dairy, gluten, eggs, citrus, alcohol, caffeine bright lights, strong smells. I have tried the full list of preventative and can't take statins. The next step is a psychiatrist as I am housebound and scared to come into contact with people.

    • StevenRose
      StevenRose tracy43395

      Posted

      Hi Tracy, you are right to look at a different approach by using a psychiatrist, because all this must have taken its toll on your sanity. I think a specialist joined up tactic would work well and maybe you can get referred to Queens Square the National Neurological Hospital in London to see the nations expert on migraines and all headaches. You certainly need to get something sorted out as you rightly say its ruined your life.

      If you can get some sort of normality in your life that would be amazing.

      If you are able to get to London I strongly suggest you think about it Tracy.

      I really feel for you and I hope you get a breakthrough soon.

      Come on anytime you like.

      Take care and best wishes

  • claudette31349
    claudette31349 tracy43395

    Posted

    I have no life either. I understand how difficult it is. The last time I did anything socially was 1 1/2 years ago. I went to a party at a neighbors that was just across the street. I was talking to someone and in the next room there was a light on that was behind her head. There was also so much noise and movement that I had to leave within an hour. I walked across the street to home and ended up on my hands and knees, retching before I could make it to my door. I've recently started using Nortriptyline and have felt better the last few days. Hoping! I fear how I will feel every single day.

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