Hi everybody it has been a while since I last posted, I feel really exhausted and frustrated at the moment. All I want is some relief for the main symptoms I'm experiencing. I wish I could have something like a normal life, but at the moment I feel paralyzed and suffocated by the mess in my head.
Health insurance companies, phone trees, and doctors appointments are all frustrating me. I haven't found a med that works at all yet and I feel I'm just falling further, and I'm afraid of my own desperation of what I might do to myself. The pain is on the left side of my head and it feels like my mind is on fire my thoughts are constricted and my memory and general functioning are terrible. These symptoms are just as bad as they were in 1997, I just feel so angry that my adolescence and adulthood have been shot down by this disease. I know I have aura events that are so much like what people experience with temporal lobe epilepsy, but they don't occur that often. It is the pain in my head the confusion, memory, thought problems that make life terrible. I'm begging for help for relief, I don't want to die or hurt myself, but it gets so bad I feel like it would be so easy to do so because nobody is providing any solutions and I feel as though no doctor no therapist will be able to save me. Please help !

Hi I don't have any answers for you.

But I would like to welcome you to our website.

I hope you can find some answers.

Donna

I'm so sorry you're feeling so desperate. I feel exactly the same. I was diagnosed with TLE a little over a year ago, and I was really happy about it at the time because I thought once we finally knew what was wrong with me, then we could fix it. But we haven't been able to. I've tried Topamax, Lamictal and Lyrica. I'm still on the last two, but still have daily problems. The worst one right now is an olfactory hallucination -- I smell cigarette smoke 24 hours a day, no matter what I'm doing, even in the shower. It's disgusting, and after a few days of it I just want to die to make it stop. I'm also foggy, confused, frustrated, often get flashes of being 'outside of reality' and deja vu. I'm having a terrible time on my job because I just can't think straight anymore. I never in my life thought I'd have to worry about being fired, but I'm worried about it now. I too think about how easy it would feel to put an end to this all, but I have a young son that I couldn't leave behind. So I just take things day by day, because every now and then I do have a good day. I try to remember the things that are good in my life, like my friends and family (and 4 cats and a dog!). Do you have a good support system? Does it help to stay active and exercise a lot? Sometimes those things help me. Also, I find that eating too much sugar seems to make things worse for me. Have you tried eliminating certain foods from you diet to see if it might help? Good luck.

Morganomics,

I totally identify with your story. It has been long years, many doctors, lots of frustration and countless $1,000's for me. BUT I AM BETTER, or better than I was anyway. I finally linked my seizures with the yummy chocolate donuts I ate. Yummy chocolate donut, awhile later - big huge complex partial seizure. I bought a glucometer and started checking my blood, sure enough, right before the seizure blood glucose would drop as low as 45, hypoglycemia. I went to a good Mayo Clinic Endocrinologist, he diagnosed me with Celiacs. He put me on a completely grain free, sugar free diet that I have been on for nearly four years now - I follow it religiously. I do really pretty well, except when I inadvertently get "glutened" - then watch out here it comes, all sorts of stuff. Epilepsy is quite common with Celiac - you might not have it, and be grateful if you don't but it is sure worth getting a iga test. I take a lot of Amino Acids, Vitamins and Essential Fatty Acids and pay special attention to my Nitrox Oxide and histamine (you learn to feel it out). I take 200 mg of Lamictal. I have a theory about the whole deal but way to long to put here - I have done tons of research.

Funniest thing is that the Aura for my seizures is smell of burnt toast, think that's a big giveaway for Celiacs. LOL

Best of Luck!

About to lose my wifi connection so I'll be brief and to the point, perhaps you all have some advice and ideas. I just completed a video EEG at IU in Indianapolis. No events so no pushing the button. Feeling poorly, mostly because I'm bloody hungry. Though I live at my mother's house there isn't ever any food, supposed to get food stamps at least these hunger pangs will leave. I'm quite poor, though I'm a working artist and furniture maker epilepsy/narcolepsy/ mental illness has left my finances in utter utter shambles. I'm always a zombie and out of it, trying not to become self-harming or too depressed. SSI case is in determination. Any ideas to help me survive the interim ?

Thanks! Missed you all here on neurotalk.

At the end of this April I went inpatient at the psych wing at a hospital, there they treated me for depression/anxiety as well as epilepsy. My SSI claim was accepted, but because I made too much in April I was denied benefits. Tonight and for the last fifteen years I feel unsteady and horrible. In one month, foodstamps, medicade and SSI were dropped, now without any resources and months of mailing documents and all my busy work has gone down the drain. I feel alienated by my friends who seem to want to stay clear of the troubled guy. Worst of all, my mind/brain is such an unpleasant place to be. I wish somebody could lift the scaffolding and help me, being a bit confused most the time and having cognitive problems with memory and attention make doing the smallest task and completing paperwork difficult. The dizziness is terrible. I have no meds to relieve the pain or clear my mental channel. After 13 years of treatment why am I just as bad as I was in the summer of 1999?