new from kingston ontario canada.....with questions :-)

Hello Liz, and welcome to our forum. =) I'm Susan, and I may have some input and possibly some advise for your thread, if not at least a bit of experience. I'm 33, (also single w/ no children) I've had E as long as I can remember, and as far as my dr thinks, I was born with it. I wasn't diagnosed, however until 12 years old. To make matters even more complicated, I was adopted when I was 3 months old, a totally closed (confidential) adoption, and was recently informed that my adoption records were burned in an arson fire. Oh, well, so much for an easy job or researching whether or not anyone else in my biological family had E. I have Temporal Lobe Epilepsy consisting of simple and complex partial sz’s as well as absence and Tonic/Clonic (gran mal). I have also been diagnosed with mood disorders, and a couple other symptoms you mentioned. Just so you know, I have no insurance, so I have no meds, but I also have no side effects. Now I haven’t had any of the first 2 on your list, but number 3, unfortunately has happened. I have been treated for mood disorders, and also for a substance abuse problem that stemmed from mood disorders and depression. That actually consisted of in-patient treatment in a hospital, as well as outpatient treatment following my discharge. Now, as far as hormones, I get simple and or complex partials every month right around that certain time. I can actually tell exactly what day I’ll start my period based on the sz’s I’m having and when. They also seemed to have evolved as I’ve gotten older, and I don’t want to say get worse, so I used the word “evolve”. They are really no worse than the ones I had when I was a child, but they definitely do feel a lot different. It’s almost like more parts of my body are involved and less of my brain (that probably doesn’t make any sense, but this is really difficult to describe). Now as far as time of day, I have partials most commonly at night, however, after a night of them, I may wake up and have a few in the morning. Sometimes I end up having them all day. Now all day could mean 5 in a day’s time, and it could mean every hour. There are also different levels of severity as well as different duration times. Most commonly, however, is to have a few at night, one or two in the morning, and they gradually taper off throughout the day. Even just at night, though, they do tend to leave me with a very “disconnected” feeling, as well as “burnt out” taste buds for a day to two days after. Now, I definitely don’t know what caused it, just because I was adopted. Yes, myself as well as a few other people here all have issues with ear ringing, so you are definitely not alone there. Lastly, I have not been told about the extent of damage done after each specific sz. My mother is a Registered Nurse with extensive medical background, and she is attempting to retrieve that information from me (was easier before she began retirement and left the hospital). I hope this helps, somewhat. Susan =)

I wish I could have read all the stuff you deleted. Feel free to email me if you want to talk. I think stressful events can sometimes put us over the edge and lower our seizure threshhold. For example, my neuro thinks I've had seizures all my life, but they've gone undiagnosed because they didn't become noticeable until recent stressful events. I'll just answer your questions for now... 1. I suffer from terrible nightmares and occasional sleep paralysis. This usually happens when I sleep on my back. I know something is going on in my sleep, but I've never been properly diagnosed. There is enough going on that I don't care to bring it up right now, either. I've been accused so often by my family of being a hypochondriac and my family doc often treats me like one. :( 2. No, but I do have a ridiculously short attention span. My husband makes fun of me for it sometimes. ;) 3. Severe depression, currently being treated with anti-depressants. Also, my seizures were initially misdiagnosed as a panic disorder. An anxiety clinic ruled that out for several reasons. 4. Not that I have noticed. However, I am on the BC pill right now. 5. I don't really know if it is age related for me. I have really bad concentration and memory problems and they are getting worse. 6. Late afternoon/early evening. 7. No. 8. No. 9. YES!! Holy cow!!! It gets really loud during a seizure to the point it's the only thing I can hear. When I'm going to have a seizure, it starts very quietly early in the day and gradually gets louder. Some days I have no ringing at all, some days I only have quiet ringing, some days the ringing gets so loud I cannot focus. Those are my seizure days. 10. No. All my neuro told me is that each time you have a seizure, your brain learns how to have another one. No brain damage showed up in my MRI.