Four days later and I still haven't received a phone call back from his medical assistant. She was very rude to me to begin with and I'm just about fed up.
My primary e-mailed me and said she was very worried about my depression and wishes there was something she could do, but it all lies in the hands of my neurologist.
I think tonight I'm going to figure out a plan to make my misery less miserable.
[by the way, I have such a picky medical insurance that there are only two locally that will take it. I can't even afford to see urgent care right now.]
you most definately need to call the neuro office ASAP and tell the receptionist you are in severe tn pain and at a loss what to do. You would like to increase the med and need direction how to do so.
I was at 800 mg of the slow release Tegretol for the longest time and had adequate pain control. Now I’m at 1600mg as well as 600 mg Neurontin and will probably need to up the dose as I’m not getting pain control. ( my neuro always gives me direction on how to increase my meds and up to what dose just in case. He also faxes his reccomendations to my doctor )
Do not accept things as they are, unfortunately we need to advocate hard for ourselves sometimes.
You must be a strong person to have kept going so long with such pain. TN is such a difficult thing to treat, and the treatment that works for one person doesn't work for anyone else. I know that when I was in pain all the time and desperate to get any help from a doctor it was so hard when no-one seemed to be listening to me. I was exhausted, depressed and desperate. I finally managed to persuade a doctor to do something, and he gave me tegretol, and refused to give me anything that would give immediate relief, even though he told me the tegretol would probably take up to 4-6 weeks to take effect. I felt completely cut off from everything and everyone, locked inside my own head with the pain, and really not sure how to survive one day more with the pain.
I'm still not sure exactly how I managed to keep going until things started to improve a bit, but, as I'm sure other people have said, things do improve. I had to keep calling the doctor and being persistent, which was really hard when I was feeling like that, but it was worth it in the end.
Do you have family and friends near by who you talk to about how difficult things are at the moment? I know that having people who listen can help, and also, although they can't stop the pain, they may be able to help with some of the practical things that are too much for you at the moment. I'm sure that they would want to help if there is anything at all they can do.
I wish there was something more I could suggest, but I found that it does take persistence with some doctors. I hope that you find some relief soon. And until then keep posting, people here really do understand how hard it is to live with this pain and everything that goes with it.
What do you mean that you will figure out 'tonite' how to make your misery less?
I want to emplore with you to not do something that you will regret later to 'help'... I am worried about you after reading this! Are you okay?
I agree with Mimi that you need to call / camp out / what ever it takes to get your doctor's attention and MAKE HIM/HER understand you NEED help NOW and to not take what you say lightly. We are all here for you kiddo and we understand how frustrating it is!! Keep us posted on how you are doing...