Community Forum Archive
Scared and LostFri, 04/24/2020 - 15:43
Topic: New to Epilepsy.com
For the past 9 months my life has been turned upside down that I have never been through before. My first “episode” , as some drs have told me, was July 24th. It was a feeling I have never felt, felt like the devil had possessed my body. The screaming, the tight, and strong clenching the teeth, the arms and fingers curled, screaming with teeth clenched. I couldn’t move and having thoughts in my head after the episode that I was going to die. After the 3rd, “episode” that day and having passed out, my family called 911, I was rushed to the hospital where I was told it was dehydration and was left embarrassed and ashamed and so small, that It wasn’t an emergency. A few weeks later I had another aura feeling and feel back with no movement of my body, eyes were open but couldn’t talk, move or felt lifeless and my eyes would have tiny drops of tears coming down the side of my cheeks (I am someone who doesn’t cry), my head always falls back without movement so we knew something was wrong. It wasn’t a cry it was just tears rolling down the side of my face. I continued to have them, but then became stronger. I went and saw my family dr and in the office I had one and he was very concerned. My clenching of the teeth began more and more and my breathing scared my husband. Sometimes I would clench and feel paralyzed and feel out of body. I always know when an episode would come on with an aura feeling every time. I could just be watching tv or in bed and one would come on. I finally went to a neurologist, did an MRI, results came back and it was a lesion that was deeper than he had seen, BUT was no big deal and brushed me away. We needed another opinion. Went to another dr. And was told that I had past trauma and It was just anxiety and I should see a therapist. Let’s just say, which I have never done, I walked out of a drs office,that day was my first I went to the car and sobbed. My husband explained to him that these episodes were not anxiety. So onto another dr. He asked me the usual questions, have I had past trauma, been in a war, been molested (and no I have never), or ever hit my head. No none of these have happened. He looked at the scans and diagnosed me with “partial complex seizures”. I was relieved that I found a dr that believed me, I was not making this up! My husband made videos and kept track of when and times these happened. But they began coming worse on meds after 3 months of being seizure free until I had what felt like a stroke. Left side of my body, couldn’t swallow feel my tongue and then the left side of my body went numb and I couldn’t move or talk and then finally passed out at the er. I was then diagnosed with Todd’s Syndrome and then put on another med along with my seizure med (costs $200). It’s fine I will find a way to afford it because it was helping me for months. I had been seizure free for 3 months, until recently. Had a close to grand mal. My hands went to my face curled up to my face, my husband couldn’t pull my hands down, shaking, teeth so clenched that he said I was screaming. I don’t remember anything. I had an appointment with what was told to me he was an epitologist that took me 6 months to get an appt with and was told he was great. He was closer to my home. Which come to find out he was not an epitologist, and then gave me the shpeel that it’s past trauma and anxiety and that some seizure are fake and they mimic them. I wanted to cry and scream and say “I KNOW WHAT ANXIETY IS!!! THIS IS NOT ANXIETY!!!” My thoughts through out this entire journey was not for myself, it was my husband who has to seen me go through this and not really getting answers because my lesion or “could be a mass” the main dr said. My family has left us because they can’t deal with this anymore. I am at a loss, I will go anywhere in the world that is the best of the best to find out what is going on and why this is happening all of a sudden. Why? I am 35 years old with nothing of medical history, I don’t take any meds besides the seizure meds, I hate taking meds! If anyone has anything to help me I would love to know if anyone has had these types of seizures: the aura feeling before, blank stare, crying on the side, the loss of movement in my limbs that take forever to come back, one time it took 5 hrs for my arms to work, I can’t talk, when a bad one comes I clench teeth, scream a little, my husband says sometimes I look at him for help but I don’t remember. Help is wanted! I really go anywhere for answers! I hope there are others out there like me!
Hi,Thank you for posting, it
Submitted by Anonymous on Mon, 2020-04-27 - 08:57
Hi,Thank you for posting, it sounds like you've been through a lot. It's important to remember that you are not alone, and we are here to help support you. We cannot determine if you these episodes you describe experiencing are seizures or a separate issue. It’s important that you're continuing to follow-up with your healthcare team (that you’re comfortable with), for further evaluation and determine what individual treatment option may be best for you. Be open and honest about how you are feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . If you feel you cannot talk openly with your doctors or that you all aren't working towards the same goals, it may be time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions . You may want to consider seeking more specialize 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), who can help explore all treatment options and determine what individual treatment plan maybe best for you. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center . We are glad to hear that your husband has been helping to document and track these episodes you've experience, which will be very helpful to review with your doctors. It's also important to document how you’re feeling in detail (like you’ve done in your post). You may also want to consider keeping a journal or a diary to document you’re feeling and any symptoms you’ve experienced, (like you’ve done in your post) with a diary or a journal. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . There are also physical or medical events that may mimic or look like seizures and are not due to changes in electrical activity in the brain, often called non-epileptic events. To learn more about conditions that are mistaken for Epilepsy like PNES (Psychogenic Nonepileptic Seizures or Events), visit: https://www.epilepsy.com/learn/diagnosis/imitators-epilepsy . Additionally there are many patient assistance programs available, (to help with medication costs), for more information, visit: https://www.epilepsy.com/living-epilepsy/247-helpline/patient-assistance. Or 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 email@example.com. epilepsy.com/helpline
Hi. I’m a licensed clinical
Submitted by Patriotrehab on Fri, 2020-04-24 - 23:17
Hi. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I have experience treating people with epilepsy and PNES. I’ve also been to doctors who have, at first, suspected that I have PNES because of the circumstances that my epilepsy started and my personal history. There are lots of Epilepsy Centers with Epileptologists, but based on your description of your events... I would anticipate that they are likely to suggest that you have PNES. I’m not trying to discourage you from going to one, however to confirm your diagnosis of epilepsy v. PNES...especially if there’s some sort of mass that may be causing these events, but I think you need to be prepared. If you do go to an Epilepsy Center, I would ask them about the possibility of an extended video EEG and a high resolution MRI. I personally went to Barrow Neurological Institute in Phoenix, Arizona for my last study and they were able to confirm my diagnosis of epilepsy. My first study was done at UCLA. You will want to have copies of all of your medical records and if you have had MRIs or EEGs, be sure to get those in digital format because the doctors like to review the actual tests themselves because sometimes the report doesn’t match what the electronic version shows. My seizures are not like your events and while I’ve heard of people having similar events...I cannot tell you whether they were seizures. Whenever a client comes to me and reports that a doctor says their seizures are “psychological”, I explain to them before we begin psychotherapy that there are a lot of doctors who don’t understand our seizures and there’s a lot of evidence that demonstrates that psychotherapy improves medical conditions even things like high blood pressure and patients responsiveness to chemotherapy, so I don’t take a position on whether they have epilepsy or PNES... I just treat them for what I understand to be the unconscious conflicts to be and if they become seizure-free and are more psychologically well then we’ve accomplished two things. As for your prescription cost, you may want to try a prescription discount program like GoodRX. They are sometimes less money than co-pays with insurance. Someone from the Epilepsy Foundation will probably be responding to you next week with some more information. I wish you the best.