Update of sorts.

So it’s that time of the week again when I have loads of therapy. So it’s time for an update.

Had the doctors yesterday, unfortunately my GP wasn’t in so I had to see a different doctor taking her place which was annoying as she didn’t know my history so didn’t really understand. I asked to be changed onto the next preventative medication and to come off of Mirtazapine as it’s not working and I’ve been on it for over 3 months. So changed to the next and final medication Memantine (Namenda). I then asked for the next and last Triptan on the letter from my neurologist as the ones before haven’t helped. She then looked confused and asked why I was asking for more medication. Good thing I know my stuff and got her to re look at the letters from my neurologist and then she finally agreed to prescribe it for me. But if I hadn’t pushed it she wouldn’t have prescribed it for me as she didn’t understand why I was asking for two lots of medication. Don’t know what I’m going to do if these final medications don’t help though.

Saw my psychologist yesterday, went well. Got to continue with my thought journal and start challenging my thoughts as to whether they are fact or not. Which is going to be hard to do. She has given me some mindfullness recordings to listen to and attempt, so I’m going to try doing that over the next couple of weeks.

Then today I had my group therapy emotional coping skills course again. Was okay, didn’t really talk other to introduce myself to the person next to me. They brought up mindfullness for people with chronic pain and I really wanted to say something about it being really hard when your in chronic pain because you have to think about and focus on the pain and that can be really scary. But I didn’t manage to build up the confidence to say anything. So I just kept quiet. Not got it again till I get back from Dubai, going to miss one session cause I’m away as well.

I had been doing okay this week and I’m really looking forward to getting to Dubai for a couple of weeks. But now I’m starting to get more miserable again. I have realised that this week it will be a year since I tried to kill myself and was in hospital in the ICU for a few days. It’s been a year yet nothing has changed, I’m still in as much pain as I was when I tried to kill myself. And I’m no closer to getting any better. So I feel a bit lost, stuck and don’t really know what to do.

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7 thoughts on “Update of sorts.

  1. Hello Sian, sorry to hear things haven’t gotten better for you. I live with the same pproblem and there isn’t a moment that I’m pain free so to say. I just want to remind you that writing like this is an excellent way of letting out some frustration, so keep at it! Secondly, you say you don’t know what to do, but I say if you can afford it find a neurologist involved in stimulator trials or BION implant trials. Never give up, all of us with chronic pain have horrible thoughts sometimes, the only way to deal with it is to talk it out, whether that be with yourself in your head as the voice of reason or it needs to be a family member for now you need all the support you can get! You can hit me up any time @mff181 on twitter or at migrainediscussions@gmail.com if you need someone to rant to =)

    Have a good weekend, or at least try your best,
    -Michael

    • Thanks Michael. I have a neurologist in London and the next step in occipital nerve stimulation but there is issues with funding in the UK at the minute so the wait is at least 2 years so I just don’t know what to do in the mean time. Yes I love writing a blog is really good to get it all down and out.
      Thanks again!

      • I’m so sorry the wait is so long there if you have the funds or some donors perhaps you should consider coming to a specialist in New York after I failed Botox and 5 different nerve blocks they are trying to schedule my occipital stim trial by the end of October.

        In any case I will chronicle my own results for you and work to raise awareness so perhaps more people will realize the urgency of these matters in the future.

      • Can’t afford to have it done privately in England and wouldn’t be able to afford to have it done in America either, my insurance no longer cover me either as I am now considered chronic and they don’t cover chronic conditions. I hope the stim helps you would be interested to know the outcome for you so let me know!

      • I sure will and I’m so sorry to hear that. I’ll have youtube videos up of everything, gonna try to even get permission to have someone from the surgical team film my procedure. I’ll chronicle each of the 5 days of the initial trial in a series of posts and videos along with a whole slew of pictures.

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