Thanks Candi. I appreciate the feedback. I've been scared to death by all this. I keep thinking that any minute I could wake up in the hospital retarded or in kidney failure. Or that my energy levels will never come back. It helps to hear from other people that have made it through worse. Ill keep in touch and check back.
Thanks Candi. I'm sorry for the delay. I appreciate the help you gave me. Everything was fine for a while, it got better on a regimen of Aptiom, Clonazapam, and a small dose of Adderall (2.5mg/day). I had one "small" grand mal in August, went to the ER, had a a CT scan I don't remember and was on my way. That left me a little discombobulated for a week or two. Then I was seizure free until last month when I had a series of grand mals that went on for almost an hour. I didn't wake up that I recall for two days when I abruptly found myself in the hospital. I was essentially mentally disabled for a while. I couldn't understand English or remember anything new at first. Have other people on here had events that severe? Nothing showed up on an MRI. I'm still waiting to get an EEG. If you can point me in the right direction I'd be grateful.View Thread
Candi, you are too sweet. God Bless You. I'm not the religious type, but that needed to be said. Okay, update. I'm still researching a lot when I'm not having difficulty concentrating or am otherwise occupied. Note #1: I went to a student massage place and got an hour long massage for $20. It was amazing. I felt sedated, but pleasantly so for a change. I'm going to work it in to my monthly routine. Update #2: My neurologist referred me to a specialist to be evaluated for chronic fatigue syndrome. This is interesting, because my mother was incidentally referred to the same doctor for chronic fatigue like symptoms that I feel may have been from falling fifty feet down a cliff (you read that right) and breaking most of the bones in her body, including many parts of her skull. (get this, she's FINE, fatigue and some confusion aside. It took a couple years, but most people would never know the difference.) Anyways! I have to get to the point. The same doctor is evaluating my brother for fibromyalgia. This raises the obvious question of genetics. It could be the cause, a component, or irrelevant. In the event that it is irrelevant, than a shared environmental factor would be the most likely culprit. My brother and I both worked with chemicals and bronze as kids. I almost never wore masks, and I remember blowing stuff out of my nose that look like glittery tar. Now I find out that it may have had lead in it. Long term inhalation of lead at an early age (I think) could definitely have done this. We also lived off and on in rural East Texas. My mom thinks we all have chronic Lyme disease that won't show up, or is actually giving mixed results when tested for. This is also possible. So Step #1: Call the art foundries where the bronze was cast! I thought it was just copper and tin in statuary bronze. I didn't know that lead was sometimes used. #2: Retest (for the fourth time?) for Lyme, #3: Talk to the chronic disease (I've been calling her the bulls*** syndrome doctor )(Yes, I know they're real diseases) doctor and see what she thinks. I guess that's where I stand. I'll let you know what come up with. Maybe I can help somebody else out too. Thanks Again!!!
Notes- Nuvigil is a stimulant approved for "shift-work sleep disorder" (The bull**** syndrome doctor probably specializes in that too.) - Incidentally, the last time I checked it was not specifically contraindicated for seizure disorders, but that may have changed and it probably lowers the threshold.
Thank you for the links and for keeping an eye out. I will definitely do the same.
Thanks Candi. I'm sorry to make you repeat yourself, my memory hasn't been great lately. I appreciate the feedback. I've been researching what I can, my energy sort of comes and goes though. I'll hit the books and webpages again soon. I haven't found any reference to hemorrhagic telangiactasia or fibromyalgia and this, but that doesn't mean they aren't there. Sorry to complain. I know there are people a lot worse off than me. I guess I was just hoping. My doctor said something about Nuvigil, I suppose that's worth a try. I could try a psychiatrist too and see if there's any help there. I know I should be happy that I can do a lot of what I do at all, but I'm just sick of being tired and weak. I don't know what would happen to my house and kids if I quit working. I think I'd be homeless. Well, I hope you're okay. Keep fighting the good fight. I do appreciate your help.View Thread
Thank you Candi. A couple of questions before I forget: What's CWLS, and what do you mean by Tell-Tale signs? I'm sorry it took me so long to reply. I have been busy and tired. I also went hunting last weekend, and I've been putting off doing this for an opportunity to reply without distractions, but I gave up on that. My ten year old son is crawling around right now and I need to clean. Whatever. I got the two teeth I broke in my sleep fixed and then broke a third while I was taking a nap two days later. That is so upsetting. I can't afford this dental work, and my right arm is still doing funny stuff when I get tired. I also find myself holding my head back, as if I were looking at the ceiling, when I get tired. It's like it makes it easier to breathe. Damage from smoking maybe? I'm mainly doing this for me, I want to help, but I guess I need some myself. I just don't understand. Do you have kids? I have two, one is eleven and the other is ten months old. I know kids are exhausting, and epilepsy is exhausting, but I barely feel like I can stand up sometimes. I've been taking 10 mg extended release Ritalin lately, which has helped tremendously with the fatigue and speech disturbances, but I'm still making careless mistakes. I drove by a school bus with the stop sign up a little while ago. The driver honked and I stopped, but it's terrifying that I did that. I can't separate out what's fatigue from parenting, what's from stress, what's from epilepsy, and what's from the meds. I know I've had some blood pressure drops myself, as low as 90/38, but I just can't shake the feeling that I'm doing something wrong, that other parents must... What? I don't know. I feel like I should ask them what their secret is. It may just be not to have seizures. I feel like a total loser and failure. Oh well. Sorry to act like such a victim. I pretty much only do it in therapy, and even there I try to keep a cap on it. There's something I'm missing though. My brother might have fibromyalgia. Do you know of any connection between these two disorders? I don't have any significant pain. I can count that as a blessing! Oh well... there are definitely sicker people than me, but if you can help point me in good directions maybe I can pay it forward. I'm sorry you have gone through so much, I hope your mother is okay. Bless you.
Hey, telangiactasia are dilated blood vessels. There are little spots on me where capillaries didn't grow. If there were larger they'd be AVM's, arteriovenous malformations. But they are too small to be classified as those. But the difference between arterial and venous pressure causes them to hemorrhage and make little blood spots on my lips and chest. They're extremely minor as far as those go, but I still find them worrisome. My neurologist seems positive that I did not have a cerebral hemorrhage, but I don't know how he can be so sure. It seems like it could have been microscopic. If you know anything about a possible connection there I'd love to hear it. Thank you so much!!!View Thread
Thanks Candi. Thank you for providing feedback. I'm sorry about what happened with Felbatol. It sounds it sounds interesting. I wish Keppra boosted awareness. I'm sorry about the medical terminology too. Most of that I've picked up over the past year out of necessity. I used a lot of it in my post in hopes of being concise. I just joined for support and tips. I wanted to find the focus of my seizures, but I'm sure a lot of people do, and I wanted to know how others handle the fatigue and general dysfunction that accompanies this kind of anomalous activity. Slowly things are coming together, but it's forming a scary picture. Orthostatic hypotension is what the drop in blood pressure associated with standing is called. I've had that for a long time, and I found a reference to it in some of the epilepsy literature I've been reviewing, but it's gone for the moment. I also grind my teeth in my sleep, which I was unpleasantly reminded of today when I realized that two of my teeth have broken at some point in the past couple of days. It's possible that it's from stress, but nocturnal tonic seizures could definitely explain the fatigue as well as that. I have a dentist appointment for in the morning and I need to ask my neurologist about wearing an EEG for a sleep study, but I'm scared of how that could affect my driver's license. I don't know what would happen if I lost it. I'd have to drive anyways I guess. I just don't know. I was shocked when I heard this, but I've been told repeatedly that alcohol withdrawals didn't have anything to do with it and can't after four months of sobriety. I did read that it is possible to develop or exacerbate epilepsy through the repeated stress, but it's hard to say. That was only one article and sounded hypothetical, but maybe not. If I hear anything I'll let you know for sure! It sounds like you have this under control, but ask if you have any questions. I have been devoting a lot of time to researching this and it would be great to help somebody.View Thread
Vitamin b6 is supposed to help. Excessive amounts can cause nerve damage, but I take a b complex every morning with a large breakfast that I feel helps tremendously with the fatigue and irritability Keppra causes. Sorry I couldn't have told you that five years ago! I hope things are better...View Thread
My name is Brian and I want to try to crowdsource my health. Apparently it's beyond my me, my psychiatrist, a neuropsychologist, and neurologist. There may not be an answer, but if you want to take a look be my guest.
Personal Background: I'm a 29 year old, 190 lb, 6' caucasian male with two children, one that's eleven and primarily lives with his mother a few miles from me, and one that's 10 months old that lives with me and my girlfriend. I live in Houston, Texas and work as a physical therapy aide. I work 8-5 Mon-Fri mostly and often exercise at work. I eat healthy, am in okay shape, and keep a regular schedule.
Health Background: I have always had problems with depression,fatigue, and mild tremors. When I was a teenager I was diagnosed with unipolar depression and ADD. I took a multitude of drugs for these but ultimately found that diet, exercise, and a mild dose of Klonopin worked better than anything (.5 mg 2x daily). In my early twenties I was also diagnosed with Generalized and Social Anxiety Disorders. I fell in to alcoholism for almost five years between the ages of 23 and 28. I quit completely almost two years ago. Four months after I quit I suffered a grand mal seizure and was status epilepticus for eight hours, at least. I came to the next afternoon. The last thing I remember was waking up, turning off my snooze button, commenting on how tired I was and wishing out loud that I didn't have to go to work. I am now more careful what I wish for I believe that orthostatic hypotension may have triggered the episode. I have lost consciousness before and had trembling fits from it. At the hospital I was diagnosed with viral encephalitis. I was in the ICU for five days. No virus was identified, my white cell count came down within a day, my MRI did not show any sign of obvious cause (I suppose it showed swelling, I'm not sure) I almost was put on dialysis for a renal overload from tissue destruction and my arm swelled from blood clots (I don't know how those tied in, I'm still researching.) Since then I have had another "clean" MRI, a neuropsych evaluation that showed some working memory and attention deficits, some discalulia (sp?), chronic fatigue, confusion, inabilibility to recall many things, aphasia (stuttering and forced words), muscle weakness, irritability, depression, some hand fluttering,and periods of absence. I do not have a history or family history of seizures. Some of these symptoms were present to a degree before the Grand Mal episode. Incidentally, I have hemorrhaging telangiactasia on my chest, face and lips. They are not particularly noticeable and my neurologist assures me that I did not have a stroke nor do I have AVM's in my brain. I do not meet the criteria for HHT. He also does not feel that my labs are consistent with an infection. All toxicology and labs came back negative/normal. I am so sick of being tired sometimes I wish I could just lay down and die. Stimulants help, but produce intolerable side effects such as hyperemotionality or uncontrollable weight loss. My current medications are listed below.
Keppra 500 mg a.m. 750 mg p.m. (This was increased due to parasthesia and loss of control of my hands. This drug is the scourge of my existence.) Klonopin .5 mg 3x daily (I'm usually too tired, so I'll take .25 a.m. and p.m.) Focalin ER 5 mg daily (Helps with the fatigue, but my eyes still hurt and I still fall asleep frequently. Strattera 40mg worked better but was discontinued due to weight loss and symptoms consistent with dehydration. Ritalin in a not ER form just bounced me all over the place. I couldn't stand taking more than 5 mg at a time, but time releasing it myself is not effective and it doesn't seem to last long)
I'm out of room! Thank You Though. That pretty much covers it. View Thread