I recently went to see my specialist nurse (she's not particularly good) she previously wrote to my GP telling him to gradually increasing my lamotrigine, I have 5mg working for the 200mg I was on before. She did not listen to me nor read my notes before I was on Sodium Valprate which I had previously (1200mg twice daily) and it did not work which she still wants to try, she's told me I am not having my absences anymore then said I am. She wrote down that I was having convulsants 1 a fortnight… read more
I mean put your concerns and wants in writing to them. As long as you keep telling them things , it's in one ear and out the other and no documentation. Document everything
Second opt.
You express yourself well. But your concerns and wishes in writing to them
She hasn't read my case notes despite being my nurse for a year or so, I agree that the MRI would be useful as would the EEG however she did not tell me about it and simply planned it, I will have to see the consultant for the result (the one that has never shown up) and I'm telling him to put it in my care plan that I am not to see her again as she does not listen, nor explain and is dismissive, because she does not like it does not mean I should not be put on it.
I've had the same type of seizures since I was diagnosed as a baby and pretty much the same side effects and symptoms and now she is defying all consultants and doctors I have had over nearly 20 years.
I should see my GP before my Consultant and he has to write back to the hospital so he can tell them that I am not happy nor am I going to see her again as to me it is pointless and a waste of NHS time. I guess they take me less seriously because I'm young but I've had this for as long as I can remember and probably from birth they might read about it but I have to live it.
I don't know how it is over there, but in the United States you THE PATIENT has the final say. If you don't want to be on a drug tell it to their face. I did that several times over the years.
Topamax can work... I was on it for many years before I had kidney stones (that is a side effect of the drug).
Having an MRI/EEG personally I am fine with. They are trying to find the point of origin for your seizures.
I guess I'm saying speak up. If you don't like proposed treatment TELL THEM! I refused to be placed on certain medications and combinations, I refused to get the VNS.