Monday, 15 August 2016

I'm Ok.

I have had a couple of comments, and I appreciate all of you who have wondered where I have been. Over the past two weeks, I have spent a week in hospital, and the rest of the time in completely pissed off pain. I'm ok, but I have been told some things that I need to process, it's nothing too concerning. It's just some things are not the way I thought they were. I will give more detail in a further post when I can wrap my head around some things. Thank you all. 

8 comments:

  1. Hi Sarah,
    Glad to see you here..have been wondering how you are..just take care of yourself the best you can xx Mel in Australia TN1 & TN2 Bilateral

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    1. Hi Mel :)
      I was just wondering what treatments have you tried? And what medicines do you take? Is your pain under control?
      Take care :)

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  2. Happy to hear from you :) I am also AGAIN in a hospital. This is the 2nd largest hospital in Norway, but they have no idea how to treat me. I have been here for a week already. Today they called to the largest hospital in Norway to ask help and send me there. Don't know yet what they answered. Have you found out why you have the pain? I am so scared and desperate. You have had the pain longer time than I have and also you have it on bought sides. How have you managed to stay alive? I have horrible suicidal thoughts every day and I don't know how to change it. Maybe you could tell me what motivates you to keep fighting and how to you manage the pain? Maybe it helps me to change my thinking...
    I hope up hear from you soon :) you are a real motivation to me. I really hope that they can fix you and take away your pain. I have read about stimulators. Have they offered you motor cortex stimulator or deep brain stimulator? Or cutting this stupid nerve?

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    1. My head has been all over the place, I'm sorry for not getting back to you. I am heavily involved in the Trigeminal Neuralgia Awareness Campaign, and that keeps me going. When I hear that hospitals and specialists haven't a clue what to do, it makes me so angry. They get to go home at the end of the say, sip wine and play golf at the weekends. For us, it's 24/7 constant agonising pain. I said exactly that to my last consultant and she realised that I was not a fool. My meds were adjusted and it's a waiting game. There is no quick solution. My Neurosurgeon told me the truth from the start. He said it may take YEARS for my pain to be controlled and that's if it can be controlled.
      We need to keep on going, keep fighting and don't let the pain win. There could be a cure right around the corner, so keep on hoping :) Oh and don't let them cut your nerve, be careful. So many people in my support group are suffering the agonising side effects!!!

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  3. Glad to hear you are doing"ok". We are here for you when you are ready to talk! Kimberly

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  4. have u tried stem cells, embryonic in Mexico? I had cronic electricity torture in my face and coursing thru my head that was created from an injury w a heating laser at a med spa. I was literally dying via electrocution from this, it's a long story, but this went on for almost 2 years. head was in a vice. I was going to stroke out or kill myself. I was so desperate that I went down to Mexico to have embryonic stem cells in Cabo. It finally has stopped. inhumane torture. please be well.

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    1. This and Gabapeptin,which I am sure you have tried. it is a fate worse than HELL. Mine was constant. All I can describe it as is being in an electric chair.

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