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11 hours ago · MRI is normal but having seizures everyday! in Epilepsy & Seizures

Crsty,

I'd go along with Leonard on new neurologist blood. Having a good neurologist has been a disappointment for a lot of people. Not all 10 yr educations came out of the best schools with the same top scores. They are just humans. Some got a D or a C and still got their licenses. The only reason I've been getting away with not having a new neurologist for the last 6 yrs is because my seizures are 90-95% controlled with no GM for 8 yrs. The current neurologist bought my then urologist's business when she moved out of state. I already had some control. I believe, reading here and just internet, for a few years, that 90% control (in my case) is good fortune not necessarily good treatment. You don't have to drop your current neurologist to interview with others. Check them out first, even BBB etc. See what their practice has been, and what studies were. Leonard may have a few how-to suggestions there. Go to the interview with all questions, as if they were interviewing for you,,, they are! When interviewing, ask them if they would have anything to add to your descriptions of your treatment and how many patients like you do they have. They likely as a matter of good business practice will not comment on some things, but may. Even if not, that will tell you something about their level.

Re: Drug adjustment/use and XR (extended release)
My drug use story here, is my current one drug only I'm afraid. I'm 63, seizures since 22, 12-14 different meds, 6 neurologists between Chicago-Carbondale IL-Denver. Current directions on 500mg limictalXR: 2- 250mg when waking for the last 2 years. Prior to that, 500mg limicatal(non XR) for 6 yrs. I went from Limictal to LamictalXR because most of my pettie mal started 5 min from waking, continuing to mid afternoon. That nonXR originally when used: 1st 250 mg when waking and 250mg at 12 noon, was in and out of me too fast to control late afternoon. NonXR has been out approx 10 yrs, XR about 3. Neurologists, when tuning in their patients seizure frequency, once a drug is providing some control, will "usually" adjust drug levels and not enter with different meds. That will not always be the case when seizures are so frequent that reducing the number of seizures is more important than adjustment. That's how some treatments get into 3 and 4 drug use.

You said, "I wrote her to ask if there was a med i could take during the middle of the day because I was having most of my seizures and auras during that time." NOTE: I DO NOT advise anyone to adjust their med directions without their neurologist. Limictal XR after swallowing takes about 4-6 hrs before it's reaction time. It's shell is tough and the stomach takes longer to open it than a softer pill. My taking 2-250mgXR 1st thing in the AM did nothing for that first portion of my day when I'm having petite mal within 5 minutes of waking. On my own I got up at 2-3 AM, ate the first pill, then back to bed, so it was in action when waking at 6AM. I took the 2nd when I waking to cover AM and afternoon seizures. When the neurologist said, "I'd like you to try some new drugs", I asked if I could try what I just described above with my getting up at night. I already had good results for 6 mos. The next visit I had 1 yr of good control and said, "it seems to give me good control etc." Again…I WILL NEVER advise anyone to adjust their med directions. The above is only to illustrate adjustments outside time periods and before using larger doses. Not all drugs have XR offered. But, ask the neurologist about XR drugs and time shifts. On line look up your meds and their action periods/behavior ("action" may not be the correct term).

Stress:
What was going on during my BEST and worst control periods (poor as it may have been) would be what I'd ask myself. What was going on, as in… was stress taking place "before" loss of drug control and frequency, or was stress the result of loss of control? Sounds like yours has been both but check it out drawing a timeline on paper if easier. I would say I'm a little more predisposed to stress than most people and, I would say stress, 90% of the time, preceded loss of control virtually every time, 2 weeks or 6 month cycles, over the last 35 years. And, stress during loss of control, when not present before extended the period of loss. One can't just say, "ok, I'm going to stop stressing". Perhaps your stress is a contributor to your not getting good information on control because, stress levels go up-down. Your neurological reaction to stress may not be 10 minutes after a high stress period.

Husband and best friends:
You may not be able to get rid of your husband or his behavior. Jake covered it. I have had the same shortness with people in my life. I've done 2 things, not to fix but maneuver with less stress. 1) Understand that if they were in your shoes for a couple years they wouldn't do it. There is nothing wrong with you. The husband I hope doesn't do this in front of other people. If so, he has no idea how he looks. I have to let it roll off and to myself say, "They just don't get it. They don't know any better". It hurts because you don't want someone you love to hurt you. It's the same attitude some have for street people. It's very similar to prejudice for any race. You kind of have to overlook their inability if you are going to live with them. 2) When I get the short frustration face from someone about my memory: Not sarcastically I'll say, "Sorry about that. I hate it too. You should try a good dose of it sometime", rolling your eyes and chuckling a bit. Sounds sarcastic but say it as though it doesn't mean that much to you to forget again and that it's something that is happening to you, not something you did. It's not fun looking at your wife/husband and thinking, they just don't understand but, it's true. For your child, when he teases you, who is still teachable, "Oh honey, If you were missing a finger or leg (then hold or touch it), I'd always love you. Just like your friends". I really shouldn't comment on your husband out loud or on paper here. Mayo would probably throw me off the boat forever. It's a big pill to swallow but, you are not alone if it helps a little!

Fri, May 24 1:19pm · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Hello Bruce,

I've been epileptic approximately 40 years. The last 10 have been Limictal. Yes, brand and generic are important. I am in a 5% group that cannot use generic Limictal, and found out the hard way. Your neurologist is aware of the problems with this and should write you a prescription that states, brand only, or specify other. It's probably a good guess that many, brand or not issues, go unnoticed or get lost in several other attempts to control other multi-behaviors in a patient.

Memory loss,,, yes,,, long and short. For all, long may be accessible one minute but not the next. I can say, the longer I can go without any type of seizure, the more short term are accessible. Leonard can comment/direct on the next (because there is plenty of info out there) but my understanding is that all incoming information in is remembered, just like anyone, just not accessible to the epileptic "at all times". Some however will truly never be recalled. Think of memory as dime size windows pasted to the surface of a basket ball. Some are intermittently opened or closed, during your attempt at recall. For most folks, the more opened, better recall. For us, there aren't enough opened often enough.

Occasionally misc prompts will trigger a memory I thought wasn't avail for recall. That was a visit of the neighborhood I grew up in from 50 yrs years ago. Interesting/enjoying but how much is it really worth in all days? It's relaxing in that I had some memory back for a few min. I also have learned somewhat,,, how to avoid having to forget in front of others. In a conversation you have to remain quiet for a bit waiting for prompts. Talk to an interrogations officer about this some time. Another view of recall is, it makes others happy that you thought enough of them to remember events with them. Not remembering is also interpreted as not caring enough to remember. All you can do is explain. And go ahead and recall when it's not prompted, like, "hey Tom, remember when we were at Joe's last month,,, that dog that chased the cat?"

Short term… I overload myself with daily information a bit (more on that abuse and side affects another time) and the only way I can combat it is a day-planner. Keep it within 20 seconds of wherever you are. It will help with many things over time, and it will show some people that you care enough to have written them down in your history. The rest of the time it provides less stress, like your grocery list at the store. Keep a month or 2 of planner history in another folder for long term recall. I have about 25 years of planners in my file. It's great fun to read occasionally, for confidence, maybe even recall practice.

Rick

Tue, May 14 11:05pm · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Lisa,

Yes, using meds now.

Someone asked about Lamictal a few conversations back so I'll add to it:
Limictal XR (Extended Release) 500mg once 6 AM. I've been on for approx 16 years with good control of general nocturnal. Some other seizures(?), are two other, by 3 neurologists over 30 years, still present. First lasts 30 to 90 seconds. Experience is not being able to speak without slurring words, cannot read, or understand what anyone may be saying. I am aware it is taking place the entire time and safe to wash knives, glass dishes. The second is 75% same as the first but, cannot make eye contact with anyone, duration 3-10 minutes with a 30 min residual confusion. However, dizzy enough to force sitting down within 30 seconds, not safe to stand, mild headache after with urge to go to sleep. All neurologists have said they are not willing to call last 2 epilepsy, more likely mild concussion related, which there was 1-2 years prior to first nocturnal gm in my twenties. Both always a 30 second warning.

Lamictal,,, does it control the gm? No gms in the last 14 years, awake or sleep. The other 2, I may not see for 3 months, and then will come in series of 5 to 8, over 2 weeks, then gone again. I was offered Lamictal 200mg per day, in the manufacturers test group before available for use for 1 year. No seizures of any during that time. GMs never returned since start of Lamictal. The others gradually came back around month 14-16 from start. I tried lamictal look alike with no success. About 5% of users must be brand only.

Lamictal and Lamictal XR are very expensive, 30k ish per year if out of pocket. I get it through GSK for approx $35 per month. Is Lamictal only though GSK, not sure. GSK, (well? who really) dropped coverage of non XR 2 yrs ago. It's a lengthy process (documents and neurologists participation) to get it but, of course worth it. GSK 866-728-4368. If on just Lamictal (not XR) check with neurologist for a change to XR but… XR is usually done to smooth/lengthen the stomachs digestion/absorption if one thinks the drug blood level is too up-down with the non-XR.

Rick

Mon, May 13 8:14pm · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Jake,

Absolutely no criticism at all. I wanted to convey to the folks that you have a lot of experience in may portions of epilepsy. I don't doubt that you have been a fantastic source for many people you never hear back from. Your opinions, I have found accurate for me. The truth be known, I'm a bit embarrassed to say, is have had and still do, a bit of bitterness for what this country has the ability to give, but knowingly drops the ball.

To listen to children's parents is pretty rough. I feel a bit sheepish every time closing the page and going on about my day after reading theirs. After those I feel fortunate, if the term is fair to use.

I thank you for the information you have given me.

Rick

Mon, May 13 9:37am · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Mostly this is to those here who have children with epilepsy, and some credit given to Leonard, for you. I don't very often write in but I do read here. I'm 64, have had e since approx 23, and have tried probably 90% of drugs out there, when there was about 3-4 only too. ^ neurologists during that time.

I was out of my parents house when seizures started and I have been alone approx 28 years of those, married now for 15. In the beginning my attitude was, no point in taking meds (note too 3-4 available when 22) because they didn't work (and it was true), and thought if I ate well enough I'd be fine. Eating well contributes it's definite good but seizures did prevail. Mine were nocturnal grandM only 1st 20 years but, I had to hide a chewed tongue for a few days at work. Leonard and I have more not so cute stories we probably won't be sharing but… I think the worst of this tour has been INFORMATION (good information!). It's poor enough anywhere, in epilepsy fields as bad, so hang on. A very important note on that !!!…. Not all info will be bad or useless. You can flood yourself days on end, get nothing, and not be sure who/what to trust. A neurologists fact is that they can be a dime a dozen and,,, when an adult with your child, with e,,, neurology EXpertS can have you in panic. DO accept that they could be wrong. Remember that their information at best is just a few years ahead of yours and that their practical use of new info is subject to not enough history on new science/uses. Keep reading and listening to other stories. Occasionally something will come through useful. Visit/read other groups for parents with children with disabilities that are not epilepsy.

My seizures are not GM any more (any more?) but enough to keep me from a regular job. Being self employed got me through that hoop, not everyone can, not as great as some say and it has it's stomach acid too. Disability $ doesn't buy rent these days. Start chasing any source of money you can find to help too.

Leonard has to have been a good filter for e info in his life. Go ahead and trust what he has to give. We (older groups) don't have all the answers but have run through a large portion of junk info to get there. You will find some (older groups) who have given up, think they are doing battle, become too tired and some cynical/angry. Don't let it discourage you. There is an evolution of drug-epilepsy-medical info that our age group has seen that will give you another perspective. I'm not as well equipped as Leonard. I've read his input for a couple years. Go ahead and use it.

Rick

Tue, Mar 26 8:51am · Prolonged phenobarbital usage in Epilepsy & Seizures

Note that I definitely invite someone to comment on my response here with corrections as needed.

@jakedduck1 is very accurate. If it comes up I wouldn't do any overnight hospital visits as it is most often used after other tests when the neurologist feels they are having trouble pointing at one specific cause.

I am 63, epilepsy since 24, approx 10-12 medications over entire time, currently on lamictal 500mg which has controlled 90% for the last 5-6 years.

I haven't heard/read of anyone on phenobarbital in some time. I was one of the first 2-4 meds used in epilepsy history. It's ability to control is limited with side effects you describe. My phenobarbital use was because at 24 to 28 years old, my seizures were (as best as possible in 70 – 80s) diagnosed as 2, with no cause determined. No cause still the case, and so explains the largest part of the number of different different I have used.

If your neurologist does not want to use what Jakedduck says, it would be best to research others.

Tue, Mar 19 10:33am · Inability to live a normal life. in Epilepsy & Seizures

To @davidinvegas. Personal tunnel…… It's pretty accurate. I'm 63 and started with a GM when I was 22. I haven't had head injuries for 15 years but remember well when I did. They still show. Lost a good job in 2003, and for 2 years had about 30 sticky-tabs on walls, doors, kit, bath, bed, front door, telephone, inside fridge, range, cabinets, to remind me what I was doing at each location when I got there. Memory was thinking someone tried to hide my toothbrush and not remembering if my sister spelled her name with a Y or an I. I hired people to drive me to work locations because in construction you can get away with it in the right place. However SS Disability doesn't cover the house payment and, a 2nd mortgage bought groceries and utilities. I had a truly crazy mean mother, worse than no help, and other large parts of the family visited by law enforcement regularly at my house. I've used quite a few meds over the time and I'm on a $2700 a month expensive one now (limictal XR), I get it $60 cheap but, gov or however the program works, it may not be covered next year or the next per the supplier stating they may not know. There is a little panic that goes with those thoughts in January. I'm just about maxed out for taking a larger dosage.

Our tunnels. I didn't tell anyone about my having epilepsy until probably 55 yrs old, and kept it to 3 or 4 people then. But by 63 it gets around with all the same-ol-same-ol that goes with it. No-help for a daily business of life. Getting older has made the tunnel easier only because, like several other items, there just isn't enough time to spend on personal assessments. Not spiteful or angry, just fact, no time. Tunnels, divorces, lost houses, work you can't have, the tunnel, the 2nd mortgage you knew wasn't going to last long. Scrambling. Giving up my own tough assessments of me happened over a 2 year period and I even started wearing shorts in the summer, haven't owned any since prob 15, bow-legged. The tunnel now is mental health degeneration with how difficult it is to fake it, but not letting it show, anywhere, lotta work. My sister has been gone 5 years, spells it with a Y. I try to measure from remembering it's a Y.

I'm fortunate right now in that seizures amount to 30 seconds of speech loss, memory that I'm fair on still learning how to hide. So that has afforded me sticking my head out of the tunnel, but I do live there too and likely will never crawl out much past my waist. David, my measure of fortunate doesn't give you the basic you need now. When some basics become 1% better I didn't know how to act. Maybe some of my act here will help you land easier when things actually do get better.

Thu, Mar 14 10:39am · How to talk to my doctor & share research/knowledge I have found? in Just Want to Talk

My story represents a couple reasons why I think it happens, for me. My story is fairly simple and 90% of yours. I've had epilepsy for 40 years and had 7 neurologists, 2 of for more than 5 years. The last 32 years I have lived in the same town, population average 400k, which may only have 8-10 neurologists. How many good in that 8-10? Neurologists practicing with epilepsy focus only are hard to find. Oddly 50% are over 50 years but that doesn't mean they have collected 50 years of epilepsy practice focused, with their gathering of new epilepsy information, lets say over 20 years. During the first 25 years I read enough to find what you said very true with the last 15 even more on my own for new info (note: there just hasn't been much of). The young bucks were better but not much. I have ended up using the neurologists (please no jaws dropping until you get there) not for diagnosis because that is accurate, but for management of my medication. 60 years ago maybe 3 medications were available for treatment. There has been a boom of new med use treatment during the last 25, now approx 15-20 meds, and it's been a giant improvement. I stay with my neurologist to keep the most effective meds I have used to date. I have used approx 10. I and most neurologists would consider an epilepsy patient well managed at 90% seizure controlled. My neurologist would prefer to try those new meds or combinations of to manage 100%. Intent well taken but, that won't be reached, in well over 50% of epilepsy patients. He may have good/better information than I, and "maybe" more client history,,, read about,,, the best he can do. We wouldn't compete but he may be impatient because he did actually know more and be frustrated having to explain. I should then say, with pen in hand, where did you get your info and where can I get new and more too. Which may make him feel on trial but,,, you have to ask because you are purchasing his services, which is another whole field of views.

Reason 1,,, Not all neurologists are up to date on the 20 new meds. #2,,, There aren't enough epilepsy patients in a town of 500k to make a profitable business, if you focus your practice on epilepsy only. Understood most medical practices are a business and there isn't time for it. Unless a specific walks into their office there isn't a reason for them to focus on your questions. #3,,, I certainly am not of mental caliber to practice 5% of neurology but, like yourself I can collect plenty of history effectively, processing well enough to present "variations of new practice history", elsewhere in the world. #4,,, A lot of human character in a diner with friends may act the same way if you present new tire information to someone who owns a tire store. Neurologists and you doctor too are human behaviors in or out of a practice, and not necessarily 1%ers, so we will have handle questions with kid gloves if he's all you have.