Since October 2001, I’ve had a seizure disorder, I’ve spent many years dealing with my body and with doctors, and most of it has been frustrating. As we enter into February 2018, I’ve decided that I need to get everything organized, share my stories, in hopes of it helping someone else, or even helping me with either getting Disability or support from others. My plan for this will be to think back to as many events as I can remember and distinguish and write about what those events felt like, what was going on before, and what was going on after. I will also discuss interactions with medical personnel, the good and the bad. I will also share advice that has been shared with me, things that I have yet to try, and things that I have found to be successful. It will certainly take quite a while to post things, and due to current seizures, and attempts at Living when I’m not convulsing, I might not update regularly, but I will try. Thanks for visiting my website, check out my posts and if you can Donate, I would be very grateful. Large donations will be rewarded with original stickers or 8×10 prints from my photography website.
Found this article on Facebook in a PNES group, figured I should share it here, since it applies. https://the-breach.com/psychogenic-non-epileptic-attacks-pnea/ Psychogenic Non-Epileptic Attacks (PNEA) By Barrie Stevenson – July 17, 2019 Background If you’ve been around the Emergency Department for a while, then you’re likely to have seen your fair share of pseudoseizures. This infamous condition can be frustrating for a busy ED doc (this post from GomerBlog captures the feeling for many). Additionally, it can be challenging at times to tell a pseudoseizure from an epileptic seizure. All in all, they are a bit of a strange entity – Neurological? Psychological?… Faking? Most of us have much to learn about pseudoseizures. Even the name is wrong: what used to be called pseudoseizures was re-defined as PNES (psychogenic non-epileptic seizures) at the turn of the century, and even this has now changed to PNEA (psychogenic non-epileptic attacks). I offer the following two papers to help us understand PNEA. The first is a recent opinion piece, co-authored by a neurologist and a psychiatrist. The second is a systematic review and meta-analysis looking at which clinical signs can distinguish PNEA from epileptic seizures. Paper 1 – overview of PNEA Tolchin B, Martino S, Hirsch LJ. Treatment of patients with psychogenic nonepileptic attacks. JAMA. 2019 Apr;321(20):1967-1968 This is a succinct and sensible presentation of what PNEA is and what it is not. In summary… Defining and diagnosing PNEA is a type of ‘conversion disorder’, listed in DSM-5 under somatic symptom disorders – i.e. it is a psychiatric rather than medical diagnosis It […]
I managed to start a YouTube Live Stream as I was between seizures. I thought about doing it as I felt the seizures starting, but didn’t quite get all the way loaded, as I also took the time to clear my computer off my bed. So, when I came to and recognized that I wasn’t done seizing yet, I finished getting the Live Stream activated and then fell back into the seizure, which lasted another hour-and-a-half. I felt ok after, a bit loopy, but back to functioning enough to finish getting ready for bed and try to get to sleep again. Yeah, wake up just so I can go to sleep. It was around 10 PM when I woke up from the seizure. Something happening outside woke me up around 1 AM, and I didn’t get much sleep after that. Next day I woke up feeling more ok than I usually am after a long seizure spell, but too exhausted to go out during the day. Which was very unfortunate, because it was one of the nicest weather days we’ve had so far this year, and I was really looking forward to a warm Saturday on the beach. Even if my car was currently working, I don’t think I was stable enough to drive and definitely not enough to walk the mile each way through the ups and downs of the coastal trail. Also, it’s been two months now, and I’m still waiting to hear back on Disability, I’ve checked the SSA website and […]
After two years since moving to Humboldt, I finally had the hearing for my Disability claim that I’ve been working on since 2014 on this round, and since 2006 in total. It’s taken so long, in part, because I did not have doctors who understood what was going on. And also the constant changing of doctors. I didn’t have a set diagnosis, but this time we do: Conversion Disorder and Psychogenic Non-Epileptic Seizures. With my not being physically able to remain on task due to anxiety and my body reacting in myoclonic seizure-like convulsions, the vocational specialist flat stated that there would be no jobs within the US that I could perform. So this gives me some hope that it may finally get approved after these 12 years of fighting. **** I know when briefly browsing this site, my other websites, perhaps even my YouTube, it looks like I can do stuff, but when you look closer at the dates of posts, or if you could watch my trying to type this, having had three episodes of being spasmed flat to my bed for a few minutes each time, so far this post, it starts to make sense why I can’t actually do this professionally, for someone else. I can put stuff together for me, but a client or employer requires deadlines and reliability that I am not able to meet. And it’s taken me 11 days to post this.
Found this article relating Ritalin use to seizures, which is one of the things we believe may be the cause of mine. In Summer of 2001, the Nation Guard Recruiter turned me away after he asked if I’d ever been on Ritalin, a few months later I had my first seizure. This article is from TheFix.com. Research Shows Ritalin Causes Long-Term Brain Injury By John Lavitt 04/14/14 Though still in the research phase, a new study showed that the ADHD drug can potentially cause clinical depression and damage to the frontal lobes. According to a study reported by the American College Of Neuropsychopharmacology, long-term use of the popular ADHD drug Ritalin can potentially result in serious brain injury. Chemically similar to cocaine, the short-term side effects of Ritalin include “nervousness, agitation, anxiety, insomnia, loss of appetite, nausea, vomiting, dizziness, palpitations, headache, increased heart rate, increased blood pressure, and psychosis.” It was thought that Ritalin had limited long-term effects, but a past study recorded in the Journal of the American Medical Association showed this not to be the case. Lead researcher, Prof. Joan Baizer of the University of Buffalo explained how “clinicians consider Ritalin to be short-acting. When the active dose has worked its way through the system, they consider it all gone.” What proved problematic to Baizer was that the research conducted “suggests that [Ritalin] has the potential for causing long-lasting changes in brain cell structure and function.” Another study funded by the National Institute on Drug Abuse revealed that Ritalin causes physical changes in neurons in reward regions of mouse brains and these effects were […]
I was able to be put in touch with a local therapist so as to make me more likely to be able to make my appointments, and that if I can’t, she can potentially come to my house. It was a typical first appointment, discussing the overview of my life history: ADD, Depression, Anxiety, and the “Seizures.” We discussed plans for going forward with Disability, and what we can do in the one month left before my hearing. We’re going to be focusing more on the triggers (the anxiety sensitivity) and looking at “Conversion Disorder” as the main focus rather than the seizures, since my “seizures” are not epileptic. I’m feeling hopeful for the help she is willing to give. ****** I had a couple small spasm episodes, and when a siren went down the highway (1/3 mile away?), my body locked up and I went into some convulsions, but mostly my muscles locked in a weird pose, and it hurt a lot. I give the episode a 5/10 on my scale (cover photo episode was a 9/10, really bad, but not the worst).
The Nightmare. Doesn’t even begin to describe it. Doctors constantly changing. They wouldn’t try to figure out what why I was having seizures. They actually accused me of faking it, or over-exaggerating. Doctors who had never seen me before, who knew nothing of my condition, telling me the thing they didn’t know about or understand must be fake. And it was many years of this. With many doctors, because they kept coming and going. At one point, I had 5 appointments with 4 different doctors. This was before the “Affordable Care Act” and after I was too old to be on my parents’ insurance, despite still being 100% dependent on them. And so I did not have insurance due to “pre-existing conditions.” My lack of insurance is possibly one reason why the CHC doctors didn’t care to try to help, along with knowing they likely wouldn’t be there long. A few times I went in to try to get paperwork filled out to get EBT Cash Aid, but the doctors, who had never seen me before and didn’t know my condition, looked at me as said they wouldn’t sign that I was disabled. Which angered me, because I’ve lost every job I’ve undertaken since the seizures started as a result of the seizures preventing me from being able to work, and so I’d end up in seizures. They’d panic and call 911, take away my driver’s license, but still refuse to sign for me to get Assistance. After watching me convulsing on the floor for […]
Last week I started seeing a new psychologist, finally got one after nearly two years in Humboldt County, and now I’m already done seeing her. I could not get stable enough to drive. There’s just no way. I’m barely standing. I had to cancel less than one hour before the appointment. Doctors, etc, usually like to be notified 24-hours beforehand for a cancelation, but I can’t do that. My health is so variable that I can never guarantee that I will be able to make an appointment, arrive at a gig (with my photography), be able to stay for the whole gig, and definitely not for a steady, regular 40-hour job. It’s also a long drive to do every week, 40ish mile round trip. She’s going to help me find someone in my town that can be more flexible in meeting location. Gist: my health prevented me from being able to make a doctor’s appointment in the last few hours prior. My health is too unpredictable to schedule activities. (This was actually not written Live at the event, but over two weeks later, on the 31st of March)
After the failure of Lamictol, we began trying other anti-epilepsy medications….remember, my neurologist said I that I didn’t have epilepsy, but couldn’t come up with an alternative diagnosis. I don’t remember the exact order of these three, but they did overlap, and it was nasty. My knees got weak, I fell asleep in classes, I was angry (though still controlled, didn’t quite have the full Keppra Rage). I started using a cane just to keep myself off the ground. After a few years of these, and one or two others I can’t recall by name, I gave up on pharmaceuticals as a treatment for my seizures sometime between 2006 and 2009, I don’t remember when exactly. I started feeling much better once I was off the pills.
In March of 2002, I started with my first Neurologist, Dr. Mary Amir (San Luis Obispo, CA). She gave me an EEG, and told me I didn’t have Epilepsy, she nearly referred me to Cardiology, until we told her that Cardiology sent us to her. So, she gave me an anti-epileptic drug, Lamictal… Yup, she tells me I don’t have epilepsy, and then gives me medication for epilepsy…. So we take a family vacation to Italy, right as I’m starting the new medication. And at first, things were ok, then they weren’t. Turns out, I’m allergic to Lamictal, and my legs broke out in rashes while we were walking around Rome, Florence, Brindisi, and Mesagna. By the time we got to Venice, I stopped taking it and the rash has subsided. But that didn’t mean Venice was uneventful. The details that lead up to this are unnecessary, so, to the point: I was having to walk very quickly through the streets of Venice, in the hot summer of early July, and I don’t do well in heat or with physical exertion. Finally, I felt the seizure coming on, I couldn’t keep walking, got my sister’s attention, and I collapsed. She got some help and an ambulance boat was called to take me to the public hospital. At the hospital, no one spoke English, and our Italian wasn’t quite good enough to explain my health issues. They found one nurse who spoke French, and so my sister and I spoke the French we knew to her, and […]
A few of the key features of my episodes were very high heart rate and low blood pressure, and since I had not lost consciousness since the first episode, the hospital and my doctor recommended I see a cardiologist, Dr. Tway, in San Luis Obispo. I changed jobs, leaving the movie theater and then finding a job at McDonald’s. Tway gave me a heart monitor to wear for a few days, during which I had classes and work. We were really noticing the state of my heart during episodes, and so we did a stationary bicycle test at home. I rode for a few minutes, fairly hard, but no harder than I’d ridden a bike as a kid, and my pulse reached 200bpm. I slowed down and tried for a cooldown instead of stopping quickly, typical recommendation for any exercise, but my pulse barely went down. After several minutes, I was still over 170, and so I got off the bike to lay down. Ten minutes later, my body went haywire, after a “sudden” drop from 160 to 100bpm. I know I had one or two during classes at that time, but I don’t really remember them enough to write about them. In March, Dr. Tway had me do a treadmill test in his office. Once again, my heart rate reached 200bpm. He had me slow and then stop once it got that high. And then I sat, and we waited for ten or more. Deciding that nothing was going to happen, the assistant began […]