I've just recently had another awful flare up. Taking all my daily medications and adding in the extras turns me into a zombie. I felt dreadful and nothing had touched my pain levels. Between them, Mum and Sarah spoke to NHS Direct, one of their nurses and an out of hours GP. Not only were we dealing with people who had never heard of TN but the Doctor asked to speak to me (despite me being unable to talk) and he questioned how somebody could still be in pain with all the medication I'd taken. I'd love to have been able to answer that, all I knew was that I was in tremendous pain and that he wasn't going to offer me any hope. He finished by saying, 'Hmmm, you take the maximum dose of Lyrica so I can't increase that. You shouldn't take another dose of morphine so I suggest you call your own GP tomorrow or your Neurologist who might be able to help. There is nothing I can do'! I managed to ask, in my best ventriloquist voice, 'How does that help me NOW'? And I thrust the phone back to Mum. There was a Doctor on the phone when I was desperate for help and, as usual there was nothing he could do. Apparently he told Mum if it was 'that bad' I should call for an ambulance. I didn't need an ambulance, somebody would have willingly taken me to the hospital, but he implied that I could be waiting there for hours and still not be given anything to help. That has been the scenario before, after a long agonising wait I've been sent home with nothing. I've also had an ambulance before now and the paramedic has told me that I have better pain relief than the hospital would give so he advised me to stay at home rather than go to the hospital. Yet I hear of people attending their local A&E or ER before now and I know for a fact that they've been given different medications either by IV or by injection. Surely there would be something they could try?
Since that night I've spoken to several people who are horrified to hear what happened and have told me that their Neurologists or Doctors have written down what they should be given in A&E or the ER if they have pain so severe that nothing they have at home will touch it. I wonder, why then, this has not happened for me. If other people living with the same condition have that to present to their local hospital, which will surely be backed up on the hospital notes or system, why hasn't anyone taken the time to offer that to me? You can bet your life that I've got that written down as a question to ask the next time I see my GP.
I need to know if there is either a hospital protocol for people who present to them in a severe flare up of a chronic condition or if there can be a suggestion given as to what they might be able to give to me in that scenario because next time, I will go to the hospital and I will insist, somehow, that they give me something to knock me out.
I'm making notes for my GP, notes for the Surgeon and notes for the Neurologist and Pain Management Doctor who I eventually see.
