Diagnosing / Experience with partial complex focal - anyone else?

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I'd like to just give a brief background: 2006: 17 years old, donated blood, immediately after, and for 3 weeks, I had seizures every other day. The experience was usually the same: nausea, vomited, extreme nostalgia feeling like I was in a memory, unable to respond to anyone around me, spoke jibberish strings of words, strong physical sensations that were hard to describe. Went to doctor. MRI was normal; however, EEG 6 weeks after stated "throughout the EEG, isolated sharp looking waveforms...Summary: this is an abnormal EEG. Isolated sharp and wave complexes independently over bilateral temporal head, more prominent over left temporal head region, suspiciously epileptiform in nature.. indicates neuronal dysfunction considered potentially epileptogenic in nature. Diagnosed with partial complex temporal lobe epilepsy. Placed on meds. Took them for about 4 months, and slowly took myself off them because I couldn't handle them well, and was a broke college student who didn't have health care. 2015: having health care again, went to doctor, told him that I still sometimes have these episodes, though much more infrequent and not as severe. Offered meds, tried them briefly but stopped. 2017: Abnormal EEG: "Mildly abnormal electroencephalogram. The rare left frontotemporal theta range slowing mentioned above is not epileptiform in nature. As mentioned, on one occasion a sharp wave was seen over the same region. These findings suggest mild focal cerebral dysfunction involving the left frontotemporal region. An epileptiform focus involving the corresponding region cannot be excluded. 2018: normal EEG 2019: Abnormal EEG "Rare, independent, 2-3 Hz delta waves in the left and right temporal regions...The described focal slowing is indicative of focal cerebral dysfunction in the involved brain regions, which is nonspecific with respect to underlying etiology and may be due to acute and/or chronic focal pathology (e.g., vascular, tumor, encephalitis, etc.). There are no definite epileptiform features." NOW: I'm trying to conceive and went to neurologist because I want to be careful during pregnancy. I gave him my above history, along with notes from the actual EEGs. I have been having these oddly similar experience when I'm trying to fall asleep that have me concerned again. With this information, he seemed rather dismissive of my history and indicated I might not "have" epilepsy anymore. When I was diagnosed in 2006 it felt definitive based on my EEG and repeated seizures that I have epilepsy and would always need to take precautions. I am scheduled for an ambulatory EEG, but have doubts that it'll tell me "anything" as I highly doubt I'll have a full blown seizure during it, and I've constantly had abnormal EEGs, and this doctor doesn't seem worried about the results. He left a note in my file recognizing my occasional deja vu and GI issues, but said my "history raises suspicion of epilepsy, but is not entirely convincing". This bothered me. It felt like the doctor was not understanding that I've never had grand mal seizures - he kept asking questions about if I've ever peed myself, bit my tongue, fallen and had strong muscle jerks, bloody noses. I kept telling him that I've NEVER had this type of seizure - I don't lose bodily control, just become mentally unresponsive and speak jibberish. I told him my last episode was around 2015 - he seems almost ready to say I don't have epilepsy anymore if my ambulatory comes back normal. This feels oddly dismissive given my history. Any thoughts on this experience? Anyone else with partial complex/focal epilepsy feel like you're not taken as "seriously"?

Comments

I have had epilepsy for going

Submitted by Patriotrehab on Mon, 2020-03-02 - 19:24

I have had epilepsy for going on twenty years and mine started as a result of medical negligence while pregnant, so when I go to see neurologists for the first time I’m given either an acceptance of the story or a very suspicious and dismissive attitude until they do all of their own tests and compare it to the reports that I have. The trouble with your case is that you haven’t always been under treatment and they are doing an ambulatory EEG rather than an extended video EEG. While there is no guarantee that you will have a seizure, there may still be abnormalities. I’m sure the doctor wants to record an event, but like what happened to me when I went for my last VEEG, they had to tell me about all three of my seizures because I didn’t know that I had them even though I thought I was aware during all of my current seizures. So, you never know...you may have some in your sleep or at other times that you are unaware. If you don’t have any events and they tell you that you don’t have epilepsy, then you need to get a second opinion. If you’re not already set up with an epilepsy center, that would be my suggestion if you need a second opinion. Some epilepsy centers are good about saying come back in 6 months or let’s do a video EEG since we didn’t find what we were looking for rather than saying you don’t have epilepsy or it’s all in your head, whereas others may not.

Do you go to visits alone, or

Submitted by birdman on Mon, 2020-03-02 - 20:24

Do you go to visits alone, or do you have a TRUSTED individual come along? I've had seizures all my life and so that has meant many visits to doctors with mother coming along in for the visit. It was humiliating to share with doctor the details of seizures with mother present. It was more humiliating to listen to mother tell of things that went on that I never remember. And then I had to worry how much of our discussion went beyond our visit with mom's talk to others.But the one advantage having mom present has been that I've always had another person along to "testify" about the lapses in memory/ awareness. I've frequently had the feeling that doctors did not recognize the extent that meds were impacting me. All patients will complain about medication side effects, but mom was very supportive about the awful effects some of the meds have had on my mood. She could tell the doctor how treatment impacted me as well as the family.

Hi, Thank you for posting.We

Submitted by Anonymous on Tue, 2020-03-03 - 10:01

Hi, Thank you for posting.We understand this must be very frustrating for you, especially if you feel like your doctors are not listening to your concerns. It can be challenging to find a healthcare team that you're comfortable with. However, it's important to have a healthcare team that is willing to work together with you, especially if you’re trying to conceive, so they can work together with you, before, during and after pregnancy, as well. As Gianna mentioned in her comment you may want to consider seeking a second opinion to for more specialized care at an epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist,(epilepsy specialist), can follow you during and after pregnancy and can help explore all treatment options and help determine what may be best for you. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-centerIt sounds like you’ve been keeping a good record of your health history, which is very important. Using a journal or a diary like My Seizure Diary, can help you organize your health records and is a great tool is a great tool for identifying & tracking seizures, setting reminders, managing medications, recording moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team.https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryAnd as Michael mentioned if may also be helpful to bring a loved one or a trusted friend along with you to your appointments to help you ask questions, provide information about any seizures they may have witnessed and help you advocate for yourself. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline .Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events and programs in your community.

Hi, Thank you for posting.We understand this must be very frustrating for you, especially if you feel like your doctors are not listening to your concerns. It can be challenging to find a healthcare team that you're comfortable with. However, it's important to have a healthcare team that is willing to work together with you, especially if you’re trying to conceive, so they can work together with you, before, during and after pregnancy, as well. As Gianna mentioned in her comment you may want to consider seeking a second opinion to for more specialized care at an epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist,(epilepsy specialist), can follow you during and after pregnancy and can help explore all treatment options and help determine what may be best for you. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-centerIt sounds like you’ve been keeping a good record of your health history, which is very important. Using a journal or a diary like My Seizure Diary, can help you organize your health records and is a great tool is a great tool for identifying & tracking seizures, setting reminders, managing medications, recording moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team.https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryAnd as Michael mentioned if may also be helpful to bring a loved one or a trusted friend along with you to your appointments to help you ask questions, provide information about any seizures they may have witnessed and help you advocate for yourself. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline .Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events and programs in your community.

Hi, Thank you for posting.We understand this must be very frustrating for you, especially if you feel like your doctors are not listening to your concerns. It can be challenging to find a healthcare team that you're comfortable with. However, it's important to have a healthcare team that is willing to work together with you, especially if you’re trying to conceive, so they can work together with you, before, during and after pregnancy, as well. As Gianna mentioned in her comment you may want to consider seeking a second opinion to for more specialized care at an epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist,(epilepsy specialist), can follow you during and after pregnancy and can help explore all treatment options and help determine what may be best for you. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-centerIt sounds like you’ve been keeping a good record of your health history, which is very important. Using a journal or a diary like My Seizure Diary, can help you organize your health records and is a great tool is a great tool for identifying & tracking seizures, setting reminders, managing medications, recording moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team.https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryAnd as Michael mentioned if may also be helpful to bring a loved one or a trusted friend along with you to your appointments to help you ask questions, provide information about any seizures they may have witnessed and help you advocate for yourself. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline .Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events and programs in your community.