Seizures change and auras change too?

@isittll
Hello Laurie,
I believe you need to tell your PCP your in between Neuros and may need need help with seizure control and refills temporarily.
Confront your primary care physician about increasing your Zonisamide.
I forgot if you have tonic-clonic seizures. I know Zonisamide is for Focals but I thought you took at least 1 other med fir generalized seizures.Tell her you can’t run out and risk Status or SUDEP.
I have only had 1 Focal that I remember and it was a déjà vu episode. I remember being told of some of others that included wondering.
I got lucky with my Neuro. If I am against something that he recommends he just moves on to something else after he tells me why he suggested it. He may disagree with my decision but he respects it. Finding a new Neurologist may be a challenge. Do you have any leads?
Good luck Laurie,
Jake

@jakedduck1
Dear Jake,
I only need refills on my lamotrigine. That is not until around Christmas. I've got enough refills on the others. She'll probably have "no more refills unless make next appointment" put on the bottle like she did earlier.

I have already looked up a few but of course there are more choices of doctors far away. I must go where the insurance says so. I can ask my PCP if she has any recommendations on neurologists for me when I see her soon. I will only see an in-network doctor. In researching the doctors there is one who is shown as practicing 4 years yet it says she has more knowledge about epilepsy than other doctors. How can that be? I though the number of years practiced was the factor.

My first one or two seizures were grand mal. They became and now are partial complex psychomotor seizures.

Laurie

@lsittll
I wouldn’t hesitate going to a younger doctor with four years experience. I believe you should inquire about the extent of her Epilepsy education.
Does she just have an interest in Epilepsy without any specialized training.
Did she go through a 4 year Neurology residency.
Did she complete an Epilepsy fellowship.
Does she have specialized EEG training.
Why does she believe she’s “more knowledgeable about Epilepsy than other doctors.”
Take care,
Jake

@jakedduck
Jake

Thank you for the specific information I should look for in researching my neurologists. I have a very complex seizure so I need my neurologist to be knowledgeable. I research my physicians online. How can i do so and get the specific information you stated directly from her?

Strangely a profile of another doctor ripe from medical school also showed the doc had more knowledge about her area pf focus

Have a nice holiday!

Take care,

Laurie

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@lsittll
The only way I know is to ask them.
Although the receptionist might know or get a message to the doctor which should save you time at the appointment.
Good luck,
Jake

@jakedduck
Jake
Hello!
I have discovered that for every doctor Healthline says that he or she knows more than anyone else about a medical issue. Very strange. I noticed when I researched neurologists last week.
Last week one night I spent hours researching epileptologists at a local hospital that are in the Cigna network. Now all I need to do is choose. I am scheduled to see my old neurologist Jan.11 so I guess I should choose to see a new neuro at an earlier date in Jan.
I got a call from my pharmacy with a recorded message that is left when it is waiting to hear from a doctor's office for a refill of a medicine. I looked and it is for the refill of one of lamotrigine. I hope she gives no problem with filling it. I wonder how much that arrogant doctor expects me to go back to her? I've seen her for 20 years!

Laurie

@lsittll
I hope the doctor doesn't give you a hard time refilling your lamotrigin or any other Anticonvulsant. Stopping them abruptly is dangerous. That doctor sure has given you a lot of grief.
Good luck,
Jake

Jake,
I found the answer to my question! I always try and see if Dr. Google can give me any information or diagnosis. I looked at one site I ignored previously and it gave the answer. It said auras are like seizures, So auras will change because they are like seizures. Despite finding this I will still listen to my internist. She told me to see a neurologist as soon as possible when I told her how my auras were changing. The new clinic said I need a referral from her to do see a neurologist and I've called for one. I need medical records from my current neurologist. The secretary is the one I spoke to, not the nurses desk. The nurses tell the doctor everything

Take care,
Laurie

@jakedduck1
Hello Mr. Jake!
I home you had a Merry Christmas. The University of Maryland released copies of my doctors notes to me. My neurologist does not even have documented in my records that I have these auras of fear and palpitations. I have had them since I started having seizures. The records don't show much or change much. She says I want to change than I do not want to change medications, and that I need to have my VNS battery changed. She sent me to the hospital neurosurgeon years ago and I denied surgery because I didn't feel it was helping. (I don't remember it. - I don't have as good a memory as you think). When I called the new doctor's office to make an appointment the office said it only needed the referral it did not need my previous neurologist's notes. They wouldn't do any good. I can just tell the doctor what the notes basically say. Nothing.

Have a Nice Holiday!

Laurie

Has anyone had reaction to covid vaccine or booster.I always had grand mal seizures the last couple weeks something new started and some people are saying it is from the vaccine.I will black out but I am sitting there and my eyes are open and people can talk to me and I will answer and with their help I can walk but i will not remember any of it at all.Has anyone had any reactions or changes in their seizures.One person got brain bleed and was told it was from the vaccine.