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crowdsourcing posted:
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.
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dancer86442 responded:
Hello Brian,


How are you today? Welcome to our Community. We aren't DRs, but, we can provide you w/ Info & support. Thank You for sharing your Journey. I don't know some of the terms. But, the Symptoms/ Issues of Gran mal, trembling & lack of consciousness, that I Know! Kinda Strange! My Daughters was diagnosed w/ anxiety/panic attacks, too. B4 Epilepsy. Yes, she had her 'wild' ways during that time. Then, at 27 her Seizures began. Took 10 yrs to find control. . You said you had your first GM after you quit drinking. Same w/ my Mom. Alcohol w/drawal can be a trigger. Hers went away. But, came back as Absence seizures a few yrs a go. That was due to Mercury poison from lead fillings in her teeth.


I'm tired of being tired, too. But, you know what has kept me going the past 20 yrs? This Group! I even expanded my wings a few yrs ago & joined another group to share what I had learned or to give support where needed. Now, I have joined several groups on Facebook. I am at an age, where, I say, Thank You, when I awake. I don't let my 'ailments' Rule my Life. But, I do make concessions. Set Limitations. I am in what I consider my 'safe' zone'.


You can clik on my ID or Pic to read my History. I appreciate your input at any time. Lots of 'gentle' hugs.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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crowdsourcing replied to dancer86442's response:
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.
 
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dancer86442 replied to crowdsourcing's response:
Hello crowdsourcing,


Sharing your Journey, supporting others', raising Awareness, it's All Good. We have a small group of steadies, so, stick around.


How do I handle fatigue? Which, btw, is a common 'complaint'. If I awoke w/ the classic tell-tale signs I would sleep for Days. If it is due to meds, I nap Or I stay active to avoid sleep. A Lot of PPL change their Diets to improve energy levels. Or they use supplements/vitamins.


W/in the past 15 yrs, Drs noted BP drops. Hospitalized me the first time. Overnight. Could find nothing wrong. So, I asked if it could be due to my meds. Doc didn't know. But, the Nurse on duty, he went & checked his PDR! Sure enough, black & white, Phenobarbital causes drops in BP> I can be sitting down & not note anything, except tingle in my arm. Kinda hurts, but, I have a High pain tolerance. So, anyway, I got my answer. I have been Blessed that the episodes are not frequent. I sleep it off. I have no Choice. Walking/talking, like a drunk, weaving/falling, Sucks. Good thing I am an ex-dancer. I learned to fall 'gracefully'.


About 5 yrs ago, I gave up driving, voluntarily. Most docs revoke licenses nowadays. But, Mine never have. But, I only drove once I Knew seizures were under control for more than a Yr. Then, I took back roads, whenever possible. This is another Issue PPL, w/ seizure disorders, find difficult to adapt to. Finding a ride or lack of public transportation is frustrating. But, I know I don't want to be responsible for hurting anyone. Even Myself! But, Some are Very Angry. Again, you are Not Alone.


My doc specializes in sleep disorders, but I didn't like him & opted to see his PA> she was fresh out of UT College & Knew Epilepsy. I Lucked Out! I know I need a sleep Study done, too. But, After reading an article the other day, It's Pointless. Epilepsy has Another Side Effect. It interrupts 'normal' sleep patterns. I always thought it was due to my pre-meno. I have no Issue falling asleep by 9-10-11pm. But, I awake at 2-3-am. After being diagnosed w/ CWLS, I had more Food for thought. Second thoughts & I Questioned the pre-meno thought. And thought, well, just maybe. Now, this New Research comes out. Confirming my second thoughts. They should have/could have used me in their studies, instead of Fruit Flies.


My Mom's seizure activity began months after her sobriety. The VA Drs chalked it up to Alcohol w/drawal. She started seeing a Homeopathic MD. Yes, that Helped her. But, my theory. We all have Different seizure Thresholds. And those w/ Epilepsy in their family are more Likely to have Low seizure thresholds. Anything can trigger them. After hearing so many Journeys, I Never discredit any Issues when it comes to triggers. Personally, I go w/ My Gut & not what DRS say. Until Proven Wrong! But, you are Rite! Stress is definitely one of the triggers for some PPL. Even Lack of sleep or 'improper' sleep can cause stress. Add that to any other Stressful Event & double whammy.


I appreciate you coming here. I apologize for not answering sooner. Sleep Mode Day, then "life Interfered' day. But, rest assured, I am Fine Today. I will be here, as often as possible to reply, give support or share More Info. After all, I have had a Lot of 'personal' experience, family experience & cyberspace family to learn from. Feel Free to share whatever you Learn. I know we have what I call 'lurkers'. PPL who are will read our Info, but, remain 'silent'. Lots of Hugs. Have a Great Day.


Love Candi.
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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crowdsourcing replied to dancer86442's response:
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.

-Brian

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!!!
 
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dancer86442 replied to crowdsourcing's response:
Hello Brian,


CWLS=Continuous Wavy Line Syndrome. I had a portable EEG done about 5 yrs ago. Was wired for 72 hrs. But, I got to be at Home. Anyway, the EEG recorded strange wavy lines. Seems I have seizures in my sleep. Only they can't be seen or felt by me or anyone. This syndrome is found mainly in children, but, is still 'rare'. My doc didn't tell me that. I learned it from Groups on FB. I have no idea if they can be controlled. Or how it will affect my brain, Later.


Tell-tale signs of a gran mal - sore all over, wake up, maybe dazed, confused, want to sleep again, (how long, varies for others'), chewed tongue. Injuries you may have sustained & not been aware of, until you awaken.


I have 2 kids. Both are grown. 42 & 25. My daughter witnessed my first adult seizure, at the age of 5. Then, over the yrs, once diagnosed, My daughter went to stay w/ her dad & I became the live-in Nanny of 2, then a live-in Auntie of 2, then a stay at home Mommy, then a nanny of four for a Yr. Then a Babysitter of anywhere from 1 to 9 kids. .Yes, I have had Kids that ain't even mine, yet are just as much Mine as their Mom's. Don't get me wrong. I did try working a few times. but, 'real' jobs never lasted for more than 6 mths for one reason or another. Last job was a cashier for 14 mths & got fired for a med mood swing. I was screaming at my manager at the top of my lungs. she was trying to 'jew' me out of my Refund, after leaving me behind a cash register for hrs. Assuming I would take a break when I could. well, that opportunity never arose. Soloed for 5 hrs. Snapped/screamed for what seemed like forever, but, maybe 2-3 minutes. OK, rambling.


Go see a Pulmonary DR. Have a test done for Copd, . More info here on WebMD. Just use the search Tool up Top. Ritalin? Aren't you supposed to avoid driving while on this med? No matter, If you are having seizure activity, you need to quit Driving. Consider your Kids! Your Epilepsy Meds puts you & them at risk. You are Not a failure. You are still a very Normal Person, who has to come to grips w/ Health issues, as well, as raise your child. I was 37 when my son was born. I was still adjusting to my meds. But, I was very Happy to be a Mommy Again. But, parenting isn't supposed to be Easy. No parents know all the tricks. I have found that keeping a set schedule w/ my kids works best. That & spend time w/ them. anyone one can be a father, but, it takes a Man to be a Dad! One Day at a Time. It says it All. For all our troubles.


see Popular discussions? Weblinks for Epilepsy may provide you w/ some links associated w/ your last question. I honestly can't say it is related. But, again, with Epilepsy & other health issues, Never say never.


Hope you are doing Ok. Lots of Love & Hugs for you & the Kids. BTW: There are books on Amazon.com for al ages about Epilepsy. check your Local Library for Tiles/authors. The Research Librarian can assist you.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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crowdsourcing replied to dancer86442's response:
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.
 
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dancer86442 replied to crowdsourcing's response:
Hello Brian,


Did I repeat myself? LOL See, even my memory isn't as good as it used to be. Problem w/ Research & Epilepsy: It is Never-ending, forever Learning! Trust me. Over the yrs, on different comps, I know I have had hundreds of sites saved. Thanks to last comp crash & no back-up, I gotta start from scratch again. But, if you checked out Weblinks for Epilepsy, a Lot of the sites I had are on that post, too. The CDC=Center for Disease Control & nind.gov??? page are best for Info.


Yes, you have options. But, being Sick of being Weak & tired is a battle we all fight. Our meds are usually responsible. In fact, can even be the cause of our memory Issues. But, keep taking one day at a time. Don't stress. Just go w/ the flow. Easier said than done. Rite? But, it can be done.


Ask your pharmacist or Dr (or both!) about supplements you can take while on your meds that may help. B complex is purported to help some w/ weak/tired symptoms. But, don't quote me on that.


I have met quite a few ppl w/ fibro & epilepsy issues. But, I don't think we ever found a link. There should be discussions in our archives about this. Use the 'Search This Community' Tool Bar. If I run across any Info on Facebook, concerning this, I will post the Info for you. I haven't heard of Nuvigil. Is that for the Fibro. A Psych may help you learn to cope & accept everything that is happening. If you feel that is what's best, then do so. I know others' that have been helped a Lot by their Psych's/counselors. One of our Past members was a Psych. I wish she hadn't 'retired' form our community. Her name was Bonnie if you want to check out some of Her replies.


I realize quitting your job is a big NoNo. But, I do hope you have a back-up plan in place, in case it is needed. Family/friends that can assist you when needed.


I am doing fine. I have my days/moments, but, they are very rare. Research & Sharing/caring for you & others' is what has kept me Sane for YRS!


You just keep me Updated! OK??? Me & my Small gang of 'family' are all here for you. Hugs!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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crowdsourcing replied to dancer86442's response:
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.

Gratefully,
Brian
 
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dancer86442 replied to crowdsourcing's response:
Hello Brian,


Thank You for the Blessing. I, too, am not a religious person per-say. But, I know I'm being watched over by Someone up there. I have had several experiences over the yrs to prove it, too. I'm not talking life threatening situations. More like 'communication' or feelings from the Man above & Family who have passed away. Kinda strange.


I read up on Nuvigil. No, seizures aren't noted, but, don't you find it strange that they treat you w/ a medication that is supposed to Help you sleep, yet a common side effect can actually Cause More Fatigue. I noted elevated white blood cells can be an issue, too. Personally, I would stick to supplements, maybe melatonin, or other natural treatments for sleep issues. Definitely, continue to see the Massage Therapist. My neighbor is a MT. I wish I could afford $20 a month to see her. She was really helpful when my Rotary cuff became disjointed? I sure could have used You! But, even w/out PT, some how it corrected itself. Thank Goodness! A former member & I were suffering at the same time from the same thing. She told me about exercises I could use. But, exercise, I avoid. Yeah I know better. But, I think I have a deep aversion to it, since my second adult seizure occurred during Warm-up exercise. Someone mentioned Sleeping on the shoulder affected & I did & several weeks later, all better.


You're rite about genetics. Unfortunately, Research is still on-going about Epilepsy Genetics. It has been Proven that Genetics play a role in Some Cases. My daughters' were. But, when I asked my DR for Genetic testing he refused. Saying that just becuz my daughter was diagnosed w/ this, didn't mean it was the cause of Mine. Give me a Break! W/ my Family History, how can it Not be related?? Me & my family were part of a Genetic Research Study conducted by Columbia University, several yrs ago. They asked all of us endless questions about how Epilepsy affects us. Symptoms & other Issues.Then they wanted blood samples from everyone. But, they weren't allowed to send results back after blood tests. I was just contacted by CU again about 2 weeks ago. We have been chosen from thousands to participate Again. I feel I am doing my part in getting Genetic Epilepsy Recognized! I didn't know that upper respiratory issues & COPD was genetic, either, until my Uncle informed me. Strange part is, a side effect of Epilepsy is upper respiratory issues, too. That worries me, becuz, my son was diagnosed w/ Juvenile Emphysema when he was 19, although he hasn't had any symptoms/signs of Epilepsy. Yet!


Wow, you may be onto something w/ the Lead poisoning. Be sure you tell your DR about That! Of course he may negate your theory, but, don't discount it. Seems you, like me, have more than 1 suspect 'cause' of our disorders. But, I have never had a DR who could/would confirm any other possibilities. (Yep, I am suspicious of Lyme Disease myself. Even though I don't think I was ever tested for it, it is a possibility. Oklahoma & Texas Ticks. I hated the dang things then & still do.) But, Drs are 'satisfied' that the Head blow caused my Epilepsy, even though I had seizures as a babe. Suggestion: do some 'homework' about de-tox drinks. Simple one: 2Qts water, 1 apple, 1 cinnamon stick. Tastes great!


Coincidental that Mom, brother & you are seeing the Same Specialist?? Maybe so. But, they do say: there is a Good reason for all that happens.


OK running out of characters. Thanks for your update. Sounds like a Good Plan to me! Remember, you may Never get 'answers'. If that's the case, Focus on Control! To me, that is way more important than 'cause', anyway. Especially Knowing that 65% of those w/ Epilepsy have 'unknown cause'.


Love & Hugs to You & Yours.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.


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