This is taking over my life

CDC funded page

Not a CDC funded Page

Hello I'm Nicole I was diagnosed with TLE as a child and when I was 14, stopped taking meds, but I think my seizures just changed and never stopped. However eegs keep coming out normal. I have episodes that seem like simple partials, but never generalize. However, it affects my everyday life because when they happen, they happen in clusters and it fries my brain. I am not able to work-I used to teach English as a second language online-because my memory is terrible now and when these episodes happen, my brain slows and sometimes it is even hard to talk. One, I feel like there is someone pushing down on my shoulders. Usually happens when I am standing in the kichen for some reason. Then i feel this awful emotion like extreme sadness and something bad is going to happen. I also feel like I need to lay down and my head feels funny. I usually go lay down and it eventually stops. Second one, I feel like a warmth rising from my stomach all the way to my chest, then I feel like one side of my face droops and feels like jell-o Lately, my back has been tightening and one of my legs feels tight too. This usually comes with a feeling of extreme sadness or impending doom. I try to talk myself through it or listen to music, but most of the time I can't avoid it and I start crying Third one, I could be doing something perfectly normal and then suddenly get hit by this sad feeling that makes me want to cry. Once I start, I can't stop. It is almost as if someone died. Afterward, I am fine, but I feel exhausted. This happened to me yesterday and I slept for hours. I am sorry this is so long. If you have read through this much, I would like to know if anyone has experienced something like this. I don't get deja-vu, but I have had moments where I saw a word and couldn't say it and it came out funny. Once I woke up and it took a few minutes for me to remember where I was even though I was clearly in my own room. Over the years, I have also had visual hallucinations. Seeing colors and wiry things floating toward me as I wake up. I am afraid I will go down the same route I went down 6 years ago and get diagnosed with pseudo seizures or psychogenic. I am willing to accept whatever it is, as long as I can get some help. I hate taking meds but I am willing to, if I can get my brain back.

Comments

Hi Nicole, Thanks so much

Submitted by Anonymous on Tue, 2019-05-21 - 15:58

Hi Nicole, Thanks so much posting and for sharing your story. It’s very important that you follow-up with your healthcare team to discuss these episodes and any potential changes in, behaviors, symptoms, side effects, or seizure types. https://www.epilepsy.com/learn/quality-care-epilepsy/seizures-adults/treating-epilepsy-adults For additional information about managing epilepsy & seizure types, please visit, https://www.epilepsy.com/learn/managing-your-epilepsy , https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure & https://www.epilepsy.com/learn/types-seizuresIt is common for people with epilepsy to report having difficulties with thinking and memory. For additional information, please visit https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memoryYou may want to consider with your doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary, https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your healthcare team.For additional questions, or help navigating local, or national resources you may always contact our 24/7 national helpline by emailing us at, contactus@efa.org and by calling, 1-800-332-1000, https://www.epilepsy.com/living-epilepsy/247-helpline. Additionally your local Epilepsy Foundation epilepsy.com/localsupport & www.epilepsy.com/affiliates ,can help you find resources, support groups, events, and programs in your community.

Hi there,I am not writing

Submitted by djavanmardi on Tue, 2019-05-21 - 17:48

Hi there,I am not writing this as a patient, though used to be. I am reaching patients to inform them of an old and very easy way to treat their medical conditions of any kind (even genetically). There have been a large number of astonishingly positive results, both traditionally and contemporarily. But, I do not wish to raise any false hope, at the same time.I am not propagating for any company/institution/religion/cult/sect,or interfering with any standard medical treatment. I am a spiritual researcher,only. I do not do this because of any profit/benefit/fame, now or in the future. And, I do not wish to be recognized/acknowledged (though, still available). But, I need to know the outcomes, in order to help the other patients. I receive my rewards, as spiritual growths.The old practice is very simple, and is done by connecting patient to existence’s consciousness. I do not do anything special, but just a simple (consciously or subconsciously) aware connector (who has experienced that great power, before), at the time of the practice. I only need the patient to give me an exact time (patient’s local time) during the day or night, that at the time, she/he should be a simple witness and aware of what is going on, inside the body, or out in the surroundings, for 10 minutes or more,and for 3 days or more (consecutive or separate), and carrying no positive or negative judgment while practicing (like a simple meditation). I do not need to know any name or any tractable information, and even the kind of illnesses,because all work will be done by the Devin Consciousness.You may feel nothing, or may experience some releasing/revealing reactions/signs/symptoms (sometimes intensely), at the time of the practice, or latter during coming hours, days, or even weeks. Those do not harm you in anyway, but needs to be patiently noticed and recognized, and be followed up with your doctor, latter. And, if you wish, the kind of illness and a brief result can be reported to me, finally, or after every session. I do not need any name,age or any other patient’s tractable particulars, and your e-mail address will not be reported or used in any form, and the content will be kept confidential.djavanmardi@hotmail.comThanksMansour

Hi there,I am not writing this as a patient, though used to be. I am reaching patients to inform them of an old and very easy way to treat their medical conditions of any kind (even genetically). There have been a large number of astonishingly positive results, both traditionally and contemporarily. But, I do not wish to raise any false hope, at the same time.I am not propagating for any company/institution/religion/cult/sect,or interfering with any standard medical treatment. I am a spiritual researcher,only. I do not do this because of any profit/benefit/fame, now or in the future. And, I do not wish to be recognized/acknowledged (though, still available). But, I need to know the outcomes, in order to help the other patients. I receive my rewards, as spiritual growths.The old practice is very simple, and is done by connecting patient to existence’s consciousness. I do not do anything special, but just a simple (consciously or subconsciously) aware connector (who has experienced that great power, before), at the time of the practice.  I only need the patient to give me an exact time (patient’s local time) during the day or night, that at the time, she/he should be a simple witness and aware of what is going on, inside the body, or out in the surroundings, for 10 minutes or more,and for 3 days or more (consecutive or separate), and carrying no positive or negative judgment while practicing (like a simple meditation). I do not need to know any name or any tractable information, and even the kind of illnesses,because all work will be done by the Devin Consciousness.You may feel nothing, or may experience some releasing/revealing reactions/signs/symptoms (sometimes intensely), at the time of the practice, or latter during coming hours, days, or even weeks. Those do not harm you in anyway, but needs to be patiently noticed and recognized, and be followed up with your doctor, latter. And, if you wish, the kind of illness and a brief result can be reported to me, finally, or after every session. I do not need any name,age or any other patient’s tractable particulars, and your e-mail address will not be reported or used in any form, and the content will be kept confidential.djavanmardi@hotmail.comThanksMansour

Hi there,I am not writing this as a patient, though used to be. I am reaching patients to inform them of an old and very easy way to treat their medical conditions of any kind (even genetically). There have been a large number of astonishingly positive results, both traditionally and contemporarily. But, I do not wish to raise any false hope, at the same time.I am not propagating for any company/institution/religion/cult/sect,or interfering with any standard medical treatment. I am a spiritual researcher,only. I do not do this because of any profit/benefit/fame, now or in the future. And, I do not wish to be recognized/acknowledged (though, still available). But, I need to know the outcomes, in order to help the other patients. I receive my rewards, as spiritual growths.The old practice is very simple, and is done by connecting patient to existence’s consciousness. I do not do anything special, but just a simple (consciously or subconsciously) aware connector (who has experienced that great power, before), at the time of the practice. I only need the patient to give me an exact time (patient’s local time) during the day or night, that at the time, she/he should be a simple witness and aware of what is going on, inside the body, or out in the surroundings, for 10 minutes or more,and for 3 days or more (consecutive or separate), and carrying no positive or negative judgment while practicing (like a simple meditation). I do not need to know any name or any tractable information, and even the kind of illnesses,because all work will be done by the Devin Consciousness.You may feel nothing, or may experience some releasing/revealing reactions/signs/symptoms (sometimes intensely), at the time of the practice, or latter during coming hours, days, or even weeks. Those do not harm you in anyway, but needs to be patiently noticed and recognized, and be followed up with your doctor, latter. And, if you wish, the kind of illness and a brief result can be reported to me, finally, or after every session. I do not need any name,age or any other patient’s tractable particulars, and your e-mail address will not be reported or used in any form, and the content will be kept confidential.djavanmardi@hotmail.comThanksMansour

Hi Nicole,Thank you for

Submitted by Jacouti08 on Wed, 2019-05-22 - 14:25

Hi Nicole,Thank you for sharing your story. I am relatively new to this and I know your feelings all to well. I was diagnosed at 30, 32 now so I don't have the most knowledge about my TLE. however, I know the pain that this can cause. When I have had similar episodes I do get the warming sensations, a blank stare and sometimes deja-vu feelings. I have had EEG's and now two MRI's, neurologists believes he sees some abnormal cells in my left amygdala. Meds have helped me, Keppra and Vimpat. I really didn't want to take meds either, but I had to do something to take control. Learning more and more about TLE and epilepsy in general has really helped my understanding of my own childhood and myself. I now think back about feeling and emotions or behavior habits that I have, had or did and it makes sense. I probably always had this however it was either overlooked or just considered a "strange" kid...I know the feeling of forgetting your words, phrases and even generalized speech. Speak with your doctors and always follow up. I'm looking for an online community where maybe I can even meet up with fellow TLE individuals.