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The waning doctor
I have an epileptologist who has always worked with me in my treatment. She has not been controlling, However that seems to be changing. She knows I cannot afford to have the battery in my VNS to be replaced. She knows that I do not want it to be replaced. She is adamant that it is an added form of medication so I need it. It is an added form of medication that does any good for me? I have had it for nearly 21 years and there is no proof that it has ever helped my seizures. Last week she had her nurse call me to make an appointment for me to have the battery checked. I tell her I must pay nearly $1,000 in copays with my insurance to have this replaced. Have you seen a social worker? When was your last seizure? 2-3 months ago I told her. The secretary calls to make the appointment and she can sense that I would rather let the battery die and dies not make an appointment. The nurse calls me later I do not call her back.
This is all to stressful for me. It is unneeded stress! Luckily so far my seizures have handled it. But for how long? I am beginning to feel that the doctor does not understand or respect the way I feel. I am beginning to feel I need a change. I do not want to have to change doctors. I do not want any other med added. I only want my Zonisamide increased. I have noticed a great change in my seizures. They have become very infrequent.
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Hello @lsittll,
I am glad to hear that your seizures are less frequent than they used to be, that is good news. I can also hear the frustration in your words. I can admire the fact that you feel the need to advocate for yourself and also the need to get help in a way that you think might be best. Right now, you feel that increasing the dose of your current med will help you. Is that right? Have you expressed that to your doctor as an alternative to her plan?
I can also understand your reluctance to make changes, both in the doctor you see as well as your current treatment plan. It is hard to make changes and changes are very stressful for all of us. I would encourage you, however, to try talking with a social worker, as suggested by your doctor's office. They have ways of helping people with financial issues related to treatment as well as helping with ways to communicate with your doctor. A social worker might be very helpful to you at this point in your treatment in talking with your doctor.
Would you consider this?
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3 ReactionsHello @hopeful33250
Increasing the current dose of my Zolpidem would be the perfect thing to do and that is what I want to do. I know that this is what will no help. No VNS! Unfortunately, I missed my last appointment with my doctor. Perhaps if I had returned the nurses call and stated that I wanted an extra Zonisamide to help control any added seizures that could result from the added stress of this. I did have an aura one night that was a "close call" shortly after all this started with the doctor. Seizures occur right after stressful things start so the incident with the doctor was the cause.
I have a social worker whom I see weekly for counseling. She will not get involved in the matter. She says she is not the person to talk to about this. She tells me my psychiatric nurse practitioner, whom she personally known, is the one I should talk to about this. I have made an appointment to speak to about the stress of this. The only thing perhaps she could do is talk to my doctor. I will not get a social worker for financial reasons related to the cost of the VNS! I REFUSE to have the battery in the VNS replaced. A medicine never controlling seizures is proof it does not work for me. Seeing a social worker is additional unneeded stress just as this whole thing is unneeded stress for me.
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