Medical Forum / Diseases and Disorders / Epilepsy / May 2008
epilepsy and electronics?
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cms - 27 May 2008 06:48 GMT Hi everyone,
I have recently found out that I have epilepsy; I have partial seizures, which run in my family, and I sometimes lose time or "zone out" and can't remember a seizure. I am in training to become an electronics technician, which involves high voltage and various risks including shock hazards. The disability counsellor at my tech school said that I should discontinue my program until I can discuss my EEG results with him and my program head. However, it may be several months before I can get an EEG. He said that "absence" seizures would definitely put a stop to my electronics career.
Does anyone know anything about the occupational safety issues involved here? Should I just go ahead and transfer to Library Technology, since books don't cause seizures or electrocution? I'm seeing my new neurologist for the first time tomorrow, and I'm kinda frustrated. I'm not sure if she'll know what to say about electrical work and epilepsy, and since I'll likely have to wait some time for the EEG (which may not show the seizure activity anyway) I don't want to spend thousands of dollars on tuition and books only to have to quit school at Christmas and wait until the next library tech class session starts in two years. I'm pissed because I went to a neurologist ten years ago for these seizures and he told me it was psychological, even after the EEG he did. If I had known, I would have made very different choices.
As an extra kick in the butt, I can't take the valproic acid/tegretol class of drugs and I'm deadly allergic to all benzos, so my medication choices will be rather limited.
 Signature Colleen, deflated
G. - 27 May 2008 15:32 GMT > Hi everyone, > [quoted text clipped - 3 lines] > which involves high voltage and various risks including shock hazards. The > disability counsellor at my tech school said that I should discontinue ***************************************************** my
> program until I can discuss my EEG results with him and my program head. > However, it may be several months before I can get an EEG. He said that [quoted text clipped - 18 lines] > -- > Colleen, deflated You should speak to your *Doctor or Neuro, wrt. your probability of finding a medication to control the szrs. (absenses = Petit Mals?)
If you find information wrt. your seizure type, or at your Local Ep. Associaton chapter, perhaps you can pass them to the "Disability Counsellor" ? (***s above) as they appear to have missed parts of their training. While there *are some types of seizures that may *not be fully controlled, or difficult to control, *they are not trained in Neurology and their assumptions show a bias that isn't accurate. Many of the people who once posted here from 1998 to about 2005 had been marked as 'beyond control' but then within a year to less some of us got that control. **I was told (by my Neuro in 1993, based on MRIs and EEGs to "Hope For" 2-3 seizures per month at a minimum, as a Target. Last 2 Complex Partials I had (stronger than your's) were Dec. 1997, June 1998... *None since then, not even absence or auras.
Do they know how these started? or what is causing them? While an EEG might detect szr. activity, it's a relatively crude tool now, as MRIs or CT scans will do a 3-D internal 'X-ray type' photo looking for internal damage that could be causing them. Based on those tests the Dr. can often then select a medication that will target the particular szr. type. If you can do a search within this group look for a Subject line like "Websites of use to newer people" I last did late last year or early this year.. I used to post that about each 2-3 months over last 4 years, so if you can find *any of those, I list about 5 websites that members (here) had put together or posted over the years. The basic U.S. one (from memory) is at http://efa.org the U.S. Ep. Foundation. There's an area in there where you can do a Medications search and see what the meds. you mentioned are designed for, side effects possible and other infomation. It's not exhaustive, but a start. Your Pharmacy might have a link if you're currently taking any you could search on. And if you're in the U.S. (I'm not) I think that efa site *also has web links to local chapters (to you) that might have information (or you could call free) with more information.
If you can't find that Websites post I mention above, reply here on this thread (shorten this msg. or start a new one with *same subject line) and I'll see it the 1 or 2x a day I read messages. I can try cut and paste the older post out of a folder (if I kept a copy) and Repost it here. Julie (if she's still around) manages the Idaho Website that has Much relevant stuff to your concerns and the 'yobs' comments, social stigmas, or some of the links I have are to Epilepsy Idaho site (assuming they didn't move it), but has much of use for people newly diagnosed or dealing with issues like you are. Keep us posted, maybe some of the 20-30 people who used to be active here in 12+ timezones will see us around here again and return. Good luck with this. G./
G. - 27 May 2008 15:54 GMT I found the olde post (forget date might have left it there) with another 5+ sites Howdy Dave and others added, and posted it above as a Separate message thread. Some light reading (links) for you. G./
(Check the Idaho site for info about Workplace Discrimination and dealing with it -- psychologically and legally wi the U.S. at least? )
cms - 28 May 2008 09:12 GMT I found the olde post (forget date might have left it there) with another 5+ sites Howdy Dave and others added, and posted it above as a Separate message thread. Some light reading (links) for you. G./ (Check the Idaho site for info about Workplace Discrimination and dealing with it -- psychologically and legally wi the U.S. at least? ) -
Thanks, I'm working my way through to see if I can find any precedents. I'm also going to try to find out about the safety rules in Saskatchewan, where I live, and maybe case law if that's all I can get. I'm starting to think that a less risky, lower-intensity job like library work might be a better long-term plan anyway. School library techs have lower average pay than electronics techs, but they also have the option of taking their summers off, and that might be good since I have way more seizures in hot weather.
Unfortunately, I screwed up the dates for my neuro appointment - it's next week so I don't know what to do in the meantime. :/ Thanks for all the help and I'll keep you updated.
 Signature Colleen
cms - 27 May 2008 16:13 GMT On May 27, 1:48 am, "cms" <cms...@hotmail.com> wrote: <snip info about my partial seizures and education>
> You should speak to your *Doctor or Neuro, wrt. your probability of >finding a medication to control the szrs. (absenses = Petit Mals?) I am seeing a new neurologist for the first time today. I have not had an EEG since 1997, and the neuro who did that told me I didn't have seizures, which has since been disproved by other information (see below). I don't know if I have petit mals, but I do "blank out" sometimes.
> If you find information wrt. your seizure type, or at your Local >Ep. Associaton chapter, perhaps you can pass them to the "Disability [quoted text clipped - 3 lines] >controlled, or difficult to control, *they are not trained in >Neurology and their assumptions show a bias that isn't accurate. I'm not sure what assumptions you're talking about. He was quite optimistic that my seizures may be perfectly well controlled in the future, but if that is possible it will still take a long time. As well, (a) I cannot take many anti-seizure meds due to severe allergies, (b) my family members who have the same seizure disorder have only partial control of their seizures with medication at best and (c) surgery is not an option with our disorder. The disability counsellor was hoping I had a recent EEG result that I could bring to him with neurologist instructions and that, if reccomended by the neuro, medication would be given time to work before I go playing with high voltage. Unfortunately, EEGs have long waiting lists in my province and I probably won't even get an initial one until after the school year starts.
<snip>
> Do they know how these started? or what is causing them? While an >EEG might detect szr. activity, it's a relatively crude tool now, as >MRIs or CT scans will do a 3-D internal 'X-ray type' photo looking for >internal damage that could be causing them. Based on those tests the >Dr. can often then select a medication that will target the particular >szr. type. My entire family has a rare brain abnormality called Periventricular Heterotopia; during development, the neurons do not all migrate toward the outside of the brain, leaving "clumps" at the central ventricals. I have had an MRI that identified the brain abnormality and have since had seizures that were witnessed by family members that know (and have) partial seizures. My GP has asserted his strong suspicion that they are partial seizures and the EEG is pending, as mentioned. We have done as much research as we can without subscribing to academic neurology and genetics journals, and we will be seeing a geneticist at some point to confirm the exact genetic defect. It causes simple and complex partial seizures in me, my mum, and my brother; my brother has also had one grand mal. The disorder was first published on in 1997 and not a whole lot is known about it other than there is one definite genetic defect that causes it, affecting about 14 people worldwide that are currently identified, and very rare "de novo" cases. Almost all who are affected have seizures.
<snip awesome resources> Good luck with this. G./
Thanks. I will try medication, but I am skeptical about getting good enough control to be operating heavy machinery any time soon, given my mom's total lack of success and my brother's 1-2 seizures a month with meds. Them are the breaks when your brain is inside out, I guess. :P
 Signature Colleen will post back when she knows more
David Ruether - 27 May 2008 17:10 GMT > On May 27, 1:48 am, "cms" <cms...@hotmail.com> wrote: [As before, my responses are my opinions ONLY!]
> <snip info about my partial seizures and education>
>> You should speak to your *Doctor or Neuro, wrt. your probability of >>finding a medication to control the szrs. (absenses = Petit Mals?)
> I am seeing a new neurologist for the first time today. I have not had an EEG since 1997, and the neuro who did that told me I > didn't have seizures, which has since been disproved by other information (see below). I don't know if I have petit mals, but I do > "blank out" sometimes. The earlier neurologist sounds totally incompetent, if he was given anything of what you give below, or believed your descriptions of what happens, and the descriptions of those around you. I'm mystified by the apparent eagerness of some neurologists to dismiss anything they cannot prove exists at a given moment as "psychological" in origin.
>> If you find information wrt. your seizure type, or at your Local >>Ep. Associaton chapter, perhaps you can pass them to the "Disability [quoted text clipped - 3 lines] >>controlled, or difficult to control, *they are not trained in >>Neurology and their assumptions show a bias that isn't accurate.
> I'm not sure what assumptions you're talking about. He was quite optimistic that my seizures may be perfectly well controlled in > the future, but if that is possible it will still take a long time. As well, (a) I cannot take many anti-seizure meds due to [quoted text clipped - 3 lines] > time to work before I go playing with high voltage. Unfortunately, EEGs have long waiting lists in my province and I probably > won't even get an initial one until after the school year starts. It is hard to plan for and work toward a potentially dangerous occupation without knowing the eventual outcome, but you do have a strong indicator with your family history, given below. BTW, EEGs are very easy to get in the US, so if travel there and payment is practical, there would be little waiting for it. You could try calling the nearest US hospital for specifics.
> <snip> >> Do they know how these started? or what is causing them? While an [quoted text clipped - 3 lines] >>Dr. can often then select a medication that will target the particular >>szr. type.
> My entire family has a rare brain abnormality called Periventricular Heterotopia; during development, the neurons do not all > migrate toward the outside of the brain, leaving "clumps" at the central ventricals. I have had an MRI that identified the brain [quoted text clipped - 5 lines] > definite genetic defect that causes it, affecting about 14 people worldwide that are currently identified, and very rare "de novo" > cases. Almost all who are affected have seizures. Yikes! Just the MRIs should satisfy any neurologist that doubts the seizures!
> <snip awesome resources> Good luck with this. G./ > > Thanks. I will try medication, but I am skeptical about getting good enough control to be operating heavy machinery any time soon, > given my mom's total lack of success and my brother's 1-2 seizures a month with meds. Them are the breaks when your brain is > inside out, I guess. :P Please do - and good luck (but I think HV electronics is out...). --DR
cms - 28 May 2008 09:33 GMT >> On May 27, 1:48 am, "cms" <cms...@hotmail.com> wrote: > [quoted text clipped - 10 lines] > by the apparent eagerness of some neurologists to dismiss anything > they cannot prove exists at a given moment as "psychological" in origin. He didn't have any info except that my mother had seizures that had been attributed to a totally different cause, which is not inherited. Her seizures were misattributed because (a) she has *two* very rare severely disabling neurological disorders and (b) the one that causes epilepsy in our family was not discovered anywhere in the world until fifteen years after she started seeing a doctor for seizures, and is still so rare that only 11 people worldwide with the disorder have ever been followed in studies.
My brain abnormality was identified after I saw the first neuro, but since the first neuro had passed off my seizures as psychosomatic, the abnormality was assumed to be just a fluke. That happened the first year that any info at all about the emerging disorder was published, and it was believed at the time to be strongly associated with intellectual disability, which is not present in the past three generations of my family.
> It is hard to plan for and work toward a potentially dangerous occupation > without knowing the eventual outcome, but you do have a strong indicator > with your family history, given below. BTW, EEGs are very easy to get in > the US, so if travel there and payment is practical, there would be little > waiting for it. You could try calling the nearest US hospital for > specifics. Good to know, but if I could afford to travel to the US and pay for an EEG, I would not be upset about my current career predicament. I currently don't know quite how I'm going to pay rent two months from now if I don't get a new job really soon, and all the jobs I have been searching for have been in the electronics field. I need to start hammering out applications to libraries, the government, and anywhere else I can think of where I can make a half-decent wage without causing safety or liability problems. And if all else fails, I can probably fake my way through working at McDonald's until I'm done school (for some value of "school"). I bet I could make it the whole summer without them noticing anything, since most of their employees are burnt teenagers and exhausted moms. : D
 Signature Colleen
G. - 28 May 2008 15:20 GMT > >> "G." <> wrote in message > >> On May 27, 1:48 am, "cms" <cms...@hotmail.com> wrote: [quoted text clipped - 47 lines] > -- > Colleen- Hide Is there a Local Chapter of an Ep. Association near you? or e.g. Regina? (websearch might get www address if they're not in phone book with 800 no.). Some of them have Job Placement assistance/ councillors who might be able to help with the Job Availabilities as they come up. The Toronto Chapter (years ago) had 2-3 people and that was their main contribution, over and above running 'group sessions' or coping workshops etc. separate from Job Assistance. G.
David Ruether - 27 May 2008 16:52 GMT [Your post reminded me to call just now to get copies of my CAT scans from last summer taken after a couple of "incidences", needed for a long-distance neurologist visit coming soon...]
[The following comments are my opinions ONLY!]
> I have recently found out that I have epilepsy; I have partial seizures, which run in my family, and I sometimes lose time or > "zone out" and can't remember a seizure. I am in training to become an electronics technician, which involves high voltage and [quoted text clipped - 3 lines] > > Does anyone know anything about the occupational safety issues involved here? I think any type of uncontrolled seizure type would make it extremely dangerous to engage in any electronics work that involves anything more than very low voltages unless the devices are not "hot" while being worked on (this still leaves open a wide range of electronics occupations, if that is your area of interest). Uncontrolled seizures preclude driving, operating dangerous machinery, etc. - and it may take some years to be sure that seizures are controlled, if they can be at all.
> Should I just go ahead and transfer to Library Technology, since books don't cause seizures or electrocution? The electronics are unlikely to cause seizures, but transfering to any other area of interest *that is safe and suitable* (there is a vast number of occupations that fit this description) is likely advisable.
> I'm seeing my new neurologist for the first time tomorrow, and I'm kinda frustrated. I'm not sure if she'll know what to say about > electrical work and epilepsy, and since I'll likely have to wait some time for the EEG (which may not show the seizure activity > anyway) I don't want to spend thousands of dollars on tuition and books only to have to quit school at Christmas and wait until > the next library tech class session starts in two years. I suspect that you know what the answer is already, since the neurologist cannot provide an "instant fix" of any kind...
> I'm pissed because I went to a neurologist ten years ago for these seizures and he told me it was psychological, even after the > EEG he did. If I had known, I would have made very different choices. If you truly show seizure activity, observed by others, and cannot remember it, then I would believe in the presence of seizures and not some hooey "psychological" nonsense. EEGs aren't everything, except *maybe* when done during a seizure. Positive EEG results prove "yes", but a lack of positive EEG results doesn't necessarily prove "no" (from what I gather...).
> As an extra kick in the butt, I can't take the valproic acid/tegretol class of drugs and I'm deadly allergic to all benzos, so my > medication choices will be rather limited. Sigh....! I wish you luck with all of this, and it is unfortunate that you must make now decisions about your future without sufficient knowledge about that, but you can still find things to do that you like that are safe and that will fit even the worst possible eventualities with the described circumstances. (And, heck, I used to describe my occupation as being "the village idiot"...8^) Withal, try to keep a sense of humor, if you can...;-) --DR
cms - 30 May 2008 09:28 GMT Hi everyone,
Just thought I'd let you all know how my situation is now.
I messed up the dates for my neuro appointment - it's next week. I did, however, find a local support phone line thanks to the links provided. The person there told me that I defintely shouldn't be doing hazardous electronics work with my type of seizures, so I have switched gears.
I talked to the head of the Library Tech program at my trade school and she was very supportive and encouraging. I will even get some transfer credits in the program, which will reduce the amount of reading I have to do and give me more time to do it.
I also got a new job. It's part-time retail work, but the manager is a family friend and has no problem with my being epileptic. He is also sensitive to issues like medication side effects, so I can just tell him upfront if I'm put on medication that might make me tired or dumb, so he can speak slowly and use small words. In addition, I plan to apply to my local public libraries for entry-level work so that I will be making more than the $500 the retail job pays. During the school year I'll try to work part-time and get student loans to help with rent. Maybe if I go on Topomax I'll save some money on food :P
Thanks to everyone for your help.
 Signature Colleen
David Ruether - 30 May 2008 15:49 GMT > Hi everyone, > [quoted text clipped - 14 lines] > > Thanks to everyone for your help. Good to hear from you, and the good news! Sounds like you are on your way - and I'm happy you have at least put off moving toward work that is potentially dangerous for you. Topamax does have that "interesting" side effect of making you less interested in food (unlike the Depakote that I take), but if you have any inclination toward developing kidney stones (probably unlikely since women have much less problem with this), Topamax may not be good. Also, for a VERY small percentage of people, it can make a shambles of speech while you are on it(it did for me - and I also have kidney stones...). For most people, it is an excellent drug, used without problems by many people for seizures, migraine headaches, etc. Good luck with it and everything! --DR
cms - 31 May 2008 02:50 GMT > Good to hear from you, and the good news! Sounds like you are > on your way - and I'm happy you have at least put off moving > toward work that is potentially dangerous for you. As usual, I just needed to be told multiple times by several people who know better than me. I think I need to recalibrate "unsafe" to account for the fact that those things which do not kill me don't actually make me stronger, they just shorten my lifespan and make me overconfident.
> Topamax does > have that "interesting" side effect of making you less interested in > food (unlike the Depakote that I take) Since it would be hard for me to be much *more* interested in food, I think it would probably balance things out nicely. Of course, now that I know that my seizures are not actually hypoglycemia as I was previously told I can break the habit of reaching for food every time I feel out of it.
, but if you have any
> inclination toward developing kidney stones (probably unlikely > since women have much less problem with this), Topamax may > not be good. Also, for a VERY small percentage of people, it > can make a shambles of speech while you are on it I read the speech language side effects and thought they were pretty funny, since I already have most of those issues. I wonder if Topamax would make them go away in me. If it made those issues worse, I would have a heck of a time :D
But I'm pretty sure that I am a good candidate for Topamax; my second neuro reccomended it to me for migraines, since it would also help with weight control. The only reason I didn't start taking it at the time was that it was brand new and prohibitively expensive. I'll see what my new neuro wants to do for the seizures, but I'm going to mention topamax to her. Anything that helps me lose weight (and save money on pop and takeout food), reduces my seizure activity, and prevents migraines is definitely worth trying.
 Signature Colleen
David Ruether - 31 May 2008 16:14 GMT >> Good to hear from you, and the good news! Sounds like you are >> on your way - and I'm happy you have at least put off moving >> toward work that is potentially dangerous for you.
> As usual, I just needed to be told multiple times by several people who know better than me. I think I need to recalibrate > "unsafe" to account for the fact that those things which do not kill me don't actually make me stronger, they just shorten my > lifespan and make me overconfident. Someone who used to write on this group told a horror story about his thinking that his auras would save him from major problems with worse seizure types by giving him time with warnings - until he had an unexpected tonic-clonic seizure while driving and injured someone so badly that that person later committed suicide. With some types of seizures, you must be very careful with stoves, taking baths, driving cars, walking near cliff and fast-moving stream edges (an issue here...;-), along street sides, etc. - you unfortunately need to think in advance of possible hazzards, even though this "narrows your world" considerably. It also helps to wear a bracelet or necklace with information so that if people find you having a seizure, they know what to do (or what *not* to do...).
>> Topamax does >> have that "interesting" side effect of making you less interested in >> food (unlike the Depakote that I take)
> Since it would be hard for me to be much *more* interested in food, I think it would probably balance things out nicely. Of > course, now that I know that my seizures are not actually hypoglycemia as I was previously told I can break the habit of reaching > for food every time I feel out of it. That would be good. With Depakote, I lost all control and got quite heavy, making my sleep apnea also worse. With Lamictal, the constant slight nausea I felt oddly made me want to eat continuously since that seemed to suppress it somewhat.
> , but if you have any >> inclination toward developing kidney stones (probably unlikely >> since women have much less problem with this), Topamax may >> not be good. Also, for a VERY small percentage of people, it >> can make a shambles of speech while you are on it
> I read the speech language side effects and thought they were pretty funny, since I already have most of those issues. I wonder if > Topamax would make them go away in me. If it made those issues worse, I would have a heck of a time :D I doubt that Topamax will make speech problems go away. Either it will have no effect (most likely), or speech becomes nearly impossible (flipping sounds and words around in sentences, stuttering, stops, difficulties initiating speech, "garbage" speech and words, etc., etc., etc., etc., etc., etc.!). NOT fun!
> But I'm pretty sure that I am a good candidate for Topamax; my second neuro reccomended it to me for migraines, since it would > also help with weight control. The only reason I didn't start taking it at the time was that it was brand new and prohibitively > expensive. I'll see what my new neuro wants to do for the seizures, but I'm going to mention topamax to her. Anything that helps > me lose weight (and save money on pop and takeout food), reduces my seizure activity, and prevents migraines is definitely worth > trying. I hope it all works for you - good luck with it! Chances are, it will work as you wish. --DR
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