The waning doctor? Not understanding how I feel.

@Isittll
Wish I had your memory.
“No” is the only word you have to say, easy fast & definite. If she argues say my decision is final and this discussion is over. Or something like that. She is stressing you out which is doing more harm than good.
Jake

Hello @santosha!

I also feel the doctor patient relationship should be a partnership. The doctor has a way of being controlling in replacing the battery. She just says I think the battery should replaced I'll refer you to Dr. X rather than I think the battery should be replaced I'll refer you to X okay? I have considered another doctor but I do not like changing doctors. I have to have someone learn my whole history which is very complex and I don't want them to add any different medications.

@lsittll
Hi Laurie, Good Morning
I just saw your exchange of messages with @jakedduck1. Great, say NO, calling the nurse today and saying this is your decision and all that is causing all too much stress to you. Hope all goes well and that your doctor finally listens to you.
I very much understand the challenges of changing doctors, especially after he or she has been with you for many years, and knows all your story. But also staying in a relationship that is no longer working well, is also not worthwhile. For me, it is the same as keeping a marriage just for the sake of the marriage.
All the best today and continue to take care of you!
Great weekend @lsittll and @jakedduck1
Santosha

Hello @jakedduck1 I will call the nurse tomorrow and ask her to relay the message to my doctor that this is causing me unneeded stress. I will request an increase in the dose of my Zonisamide to offset the stress that this is causing. I will tell her to call the psychiatric nurse practitioner if she has any questions. The psychiatric nurse practitioner told me today to do this.
If an increased dose of Zonisamide would even create better control than a seizure every 2 or 3 months I could really prove the doctor wrong! Yoo Hoo!

Take care,
Laurie

How often do we see our doctor for the first time and like them then but thereafter we find that is not for me. Vice versa occurs. I went to my epileptologist for the first time and couldn't stand her. She changed thereafter and became my favorite doctor because of how he has always worked with me in my plan of treatment. But that seems to be changing and so is she. She is so adamant that the VNS is an added form of medication and that it is a good one. But not all medications work for everyone. There is no proof that the VNS has never worked for me in the 21 years I have had it. She still insists the battery be replaced. The other week the nurse called that the doctor wanted me to go in to have the battery checked. I told her I must pay nearly $1,000 in copays to have the battery replaced. Have you seen a social worker? When was your lasts seizure? 2-3 months. Okay I'll tell the doctor this and have the assistant call and schedule an appointment. The secretary could somehow sense that I wanted to let the battery die and so she made no appointment. The nurse called the next day. I have never returned the call. This is too much unneeded stress. Fortunately my seizures have handled it. But for how long? I am most uncomfortable with using the VNS. She has added Zonisamide and it has miraculously decreased my seizures Because my MD has wanted me to be comfortable with my treatment if I tell her this she will back off. If not somehow I will have to tell her some sort of change is needed. I do not want to change doctors. My social worker will not get involved in this. She isn't knowledgeable about it either. You are the ones that have the knowledge and I respect your comments.

@is

@lsittll
Hi Laurie, Good Morning
I have just watched this video S.T.E.P.S. - A Discussion Guide for Patients With Epilepsy and Their Doctors on STEPS video library. I remembered you!
https://www.stepstowardzero.com/#why-steps
As shown through a survey, there is a clear disconnect in the conversations people are having with their doctors.
Have a nice weekend!
Santosha

Hello @sanatosha!

Thank you for thinking of me. I must change at this point whether I want to or not. There are things that obviously are not documented clearly in my medical record because the nurse could not find these things in my records. She's no good doctor I had to call the neurologist's nurses line two days ago because of a horrible unusual type of aura. I haven't heard back. That was two days ago. The nurse was very rude when she said so you won't have the battery replaced. She was even more rude when she said WHY? in response to me saying the matter has been so stressful. There must be good communication between all parties.

@lsittll

My pleasure @lsittll! Sad to hear about all those conflicts. Hope you will be over it very soon!
Take care!
Santosha

How often do we see our doctor for the first time and like them then but thereafter we find that is not for me. Vice versa occurs. I went to my epileptologist for the first time and couldn't stand her. She changed thereafter and became my favorite doctor because of how he has always worked with me in my plan of treatment. But that seems to be changing and so is she. She is so adamant that the VNS is an added form of medication and that it is a good one. But not all medications work for everyone. There is no proof that the VNS has never worked for me in the 21 years I have had it. She still insists the battery be replaced. The other week the nurse called that the doctor wanted me to go in to have the battery checked. I told her I must pay nearly $1,000 in copays to have the battery replaced. Have you seen a social worker? When was your lasts seizure? 2-3 months. Okay I'll tell the doctor this and have the assistant call and schedule an appointment. The secretary could somehow sense that I wanted to let the battery die and so she made no appointment. The nurse called the next day. I have never returned the call. This is too much unneeded stress. Fortunately my seizures have handled it. But for how long? I am most uncomfortable with using the VNS. She has added Zonisamide and it has miraculously decreased my seizures Because my MD has wanted me to be comfortable with my treatment if I tell her this she will back off. If not somehow I will have to tell her some sort of change is needed. I do not want to change doctors. My social worker will not get involved in this. She isn't knowledgeable about it either. You are the ones that have the knowledge and I respect your comments.