Medical Forum / Diseases and Disorders / Epilepsy / January 2006
Opinions?
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Mindy Van Wert - 23 Jan 2006 00:57 GMT Hi there.
I am a 26 year old woman who has had seizures since the age of 16. I have had a few grand mal seizures when I was younger, but mostly I have absence seizures. I stare off sometimes, but other times I act strangely. I talk in my sleep and sleep walk more than ever. I can't understand what people are saying to me...I can hear them fine, but it's like they are speaking another language to me. I once had a photographic memory, but now I am lucky to remember anything at all. I also get these feelings like something is dreadfully wrong, like something bad is going to happen to those I care about. I actually call people in the middle of the night to see if they are ok. Things have gotten even more complicated as I am having balance problems. It started out as tingling in my toes, then leg cramps, and now my legs give out on me and I am constantly falling. My hands won't grip things properly, and I cannot do the simplest things such as buttoning a shirt at times.
I was once on Depakote, but did not like the effects of it. So I went without medication for 6 years. Now I am worse than ever, and my neurologist started me on Depakote once again although I said I did not want to take this medication. My EEG was abnormal, and my license was taken away. My great grandmother died from a brain tumor, my grandmother also, and my mother has had two cerebral aneurysms.
Not only am I still having seizures (I just started the medication last week), but my body is not yet adjusted to it. My doctor filled out paperwork for a temporary leave of absence so that I will not be penalized for missing work if I have an episode or need to be seen for treatment, but my coworkers do not understand and are treating me like absolute garbage. They make comments to me if I miss work, ask me questions about my condition and then try to make it seem like there is nothing wrong with me and that I am just trying to get out of work. When I am at work, I work very very hard, and some of the women I work with tell the others that I am not pulling my weight and that they need to do my work for me...it is completely untrue! How do I cope with people like this?
Anyway, I just needed to sound off. I am getting very frustrated here. I can't drive now, I feel like crap, and I'm tired of people's attitudes.
Thank you.
 Signature Mindy
If you can read this, you're not the president.
G. - 23 Jan 2006 04:44 GMT Well, this is the *right place to be. Others read the group mostly during the week, so will have some ideas or comments to add. Did the Dr. suggest if there are other things than epilepsy that contributes to some of the symptoms you described? The balance and falling sounds to a non-neuro like other things (related to ep?) adding to your condition? Or did those seem to get worse on the current med.? Some pills can take e.g. 1-2 weeks to get used to a new dose, to see if it's working. *Usually (not always), some meds. that stop working aren't restarted a 2nd time. Often they would try another (possibly related) pill to see if better szr. control can be reached. If you're have e.g. szrs. at night, those can also contribute to muscle cramps and pains the following day (been there, done that). G.
Mindy Van Wert - 24 Jan 2006 14:28 GMT Thanks for your response :-)
The balance problems started before the medication. I just had two EEGs within a month of each other, and they were both abnormal. My MRI was normal, but my neurologist mentioned that I may have to have an MRA because of my mother's two cerebral aneurysms and the possibility that I may develop one.
My boyfriend is a physical therapist, and he first thought my balance problems and the pain and tingling in my legs could be from a problem with my back. I am a CNA, and my job does a lot of wear and tear on my body. After he examined me, however, he said my back wasn't that bad off where I would be having trouble walking at times.
I started the Depakote almost two weeks ago now, and it has taken care of the headaches, but I am still having those staring spells once in a while. My balance and energy have improved somewhat. In a few days, my neurologist told me to double my dosage, so here's hoping things will improve even more.
Have you experienced any discrimination at all throughout your life? I am in disbelief how everyone is treating me. No one treats me the same anymore. Some people are nasty to me, saying I am incompetent (even though I still work just as hard as before), others are sickeningly sweet to me, asking if I am ok every time they see me. I don't know. :-(
 Signature Mindy
If you can read this, you're not the president.
> Well, this is the *right place to be. Others read the group mostly > during the week, so will have some ideas or comments to add. [quoted text clipped - 8 lines] > If you're have e.g. szrs. at night, those can also contribute to > muscle cramps and pains the following day (been there, done that). G. G. - 24 Jan 2006 15:32 GMT Some of the medications we use might affect Balance and coordination, during phaseup of a new dose, as our bodies adapt to it. That was mainly why I asked that earlier.
Did they tell you where the EEGs were abnormal? (Only share that if you're comfortable with it. But several of the szr. types differ depending on which area the szr. focus is, and therefore the type of szr. you might have or be prone to.) That's probably telling you what you *already know, I realize, but sometimes others might read these too and have similar conditions. This will also be interesting for others here, as your's looks like it might be the first time where an MRI doesn't find any glitches that may describe why there's electrical firing causing szrs., but not a physical area that triggers it there? *Note, I'm not the Neuro here, so that doesn't mean (you know already) that other events in our body or possibly other things might interfere still with the electrical circuitry that makes us work. (For example I don't know if the backaches you described would involve spinal nerve links, that are connected in there too. I've had some awful backaches, usually from uncontrolled nocturnal szrs., but can see why your boyfriend would suggest that the tingling in legs and trouble walking could easily come from there. The staring spells are usually listed on http://efa.org or Julie's Idaho site (if you see one of her posts or one I did about a week ago that lists 4-5 www sites), as Absences or possibly Simple Partial seizures? Those can be entirely normal as the Depakote gets control of anything else the Dr. is treating. (I've never used that one, but others here have. Hopefully they'll post and tell us *which types of szrs. they are using it for*, as that might help you too, in determining which type he's treating. You could ask them if they didn't tell you already, *or if you got a printout from your Pharmacy with the pills, it usually says 'this medication is used to control x,y,z types of conditions' and might help. If others don't have comments in next day or 2, I found my Pharmacist an excellent source both of information and sometimes of a www address where I could read more detail about a particular med.
Your Co-workers sound like a High Class bunch. Is this in a Medical Facility where they're acting like that? They're *Not treating people I hope for medical condtions. That would be like putting a Thug in charge of a Bank. Depending where you live, there are workplace anti-discrimination laws, that they should be aware of, even if they *were Yobs. Canada and US had those in-place since I was in High School (**1960). Perhaps they got left behind when the Year-counter rolled over to '2' and accidentally set their's back to 1800. I had that in 1980 when I had heaviest brain damage from Encephalitis. I dread seeing one of 2 supervisors I had back then, showing up at our 'Retired People's Barbecues'. I've had multiple dreams about that, and it's not pretty but neither of them survives... This was a large company where if you are ' 5 levels up' you require a basic understanding of Labour Laws and Compassion or shouldn't be there. Neither of them had minimal skill there. G./.
Mindy - 24 Jan 2006 15:40 GMT The type of seizures I am being treated for are temporal lobe seizures. My neurologist said that Depakote was indeed the best choice for seizures that originate in that part of the brain.
And to answer your question, yes, these people I work with are nurses aides and nurses. I once spoke to a union rep about this (who, by the way, is also an aide), and she told me that if we weren't short handed the company would probably even fire me. I'd like to see them try it. And if people keep harassing me, I'm going to file a complaint. I am there to take care of my patients, not put up with crap from ignorant coworkers.
 Signature Mindy
If you can read this, you're not the president.
> Some of the medications we use might affect Balance and > coordination, during phaseup of a new dose, as our bodies adapt to it. [quoted text clipped - 49 lines] > basic understanding of Labour Laws and Compassion or shouldn't be > there. Neither of them had minimal skill there. G./. G. - 24 Jan 2006 16:00 GMT If you're in US or Canada and they fire you 'without cause' but you can prove it's because of their violating Disabiliity laws, there are some *Large settlements against companies for breaking the law, like she'd be doing for firing you. And without being a Lawyer-- in some jurisdictions, Legal awards are exempt or subject to reduced Federal Tax. Unfortunately you'd have to find a Legal referral to confirm that, as your Union don't appear to know local laws or bylaws.
Your Union sounds like a good use of your Dues too. :-< What exactly do they think They were formed for? Serving tea? They *aren't representing their members from the sounds of it. G./
Dave Keays - 26 Jan 2006 00:18 GMT Mindy Van Wert wrote:
[snip]
> Have you experienced any discrimination at all throughout your life? I am in > disbelief how everyone is treating me. No one treats me the same anymore. > Some people are nasty to me, saying I am incompetent (even though I still > work just as hard as before), others are sickeningly sweet to me, asking if > I am ok every time they see me. I don't know. :-( Could I intervene again?
Something that helped me handle the feelings others caused was to realize that it was *their* ignorance, *their* problems, and *their* attitude would probably come back and continuously bite them later. Your situation is a lot less of a problem than theirs.
As far as people who are trying to help but cause more problems (like those "sicking sweet" idiots), a little education usually helps. After all, they are trying to be nice. They just don't know how to go about it and you can help. Our situation is frustrating for others too.
G. - 26 Jan 2006 14:34 GMT Excellent points. The other's baggage is something they'll carry until they get older and need someone to help them too.
With respect to the people who want to be nice, that's just compassion at work, and an excellent opportunity to educate them that you're not going to have a life-threatening event they ight fear they couldn't handle. Julie's Idaho website has an Excellent First Aid for Seizures page you could print to show them what symptoms look like and what to do, to aid return to normal without any complications.
I found that people at businesses I frequented most, felt far happier knowing there were simple things they could do to help me, without calling 911 just because I happened to fall down (before I was controlled). It's also a chance for you to help educate those who want to learn that it's not something to fear, but where they genuinely want to help you. G./
Dave Keays - 26 Jan 2006 15:35 GMT > Excellent points. The other's baggage is something they'll carry > until they get older and need someone to help them too. I always took that approach and tried to educate people whenever possible. Once I even tried some stand-up comedy based on Epilepsy and the frustrations it causes. It would have gone over better if I was a better comedian. Oh well, it was fun and I learned something.
Anyway, the reason I brought the comedy up is that you could see it helping. Sometimes peoples eyes glazed over or their face stiffened when I told them I had epilepsy. Then once I mocked my seizures with a cheap one-liner, you could see the stress relieved. A touch of humanity does wonders.
Talking about a persons past "baggage" and the burden it can cause. It doesn't always take long. They have guaranteeing that they wont get the help they need it. I've also seen these people loose because of the bad reputation they've given themselves.
> With respect to the people who want to be nice, that's just compassion > at work, and an excellent opportunity to educate them that you're not > going to have a life-threatening event they ight fear they couldn't > handle. Julie's Idaho website has an Excellent First Aid for Seizures > page you could print to show them what symptoms look like and what to > do, to aid return to normal without any complications. Compassion is like fire: necessary, warming, and dangerous
What really gets me are those that require think they are superior because of their false compassion. Many times they end up hurting others while their egos grow bigger.
> I found that people at businesses I frequented most, felt far happier > knowing there were simple things they could do to help me, without > calling 911 just because I happened to fall down (before I was > controlled). It's also a chance for you to help educate those who > want to learn that it's not something to fear, but where they genuinely > want to help you. G./ I once had a client (I was a computer consultant for small businesses in the 80s) who I forgot to tell. When I had a seizure at their business my contact took me aside and asked why I didn't tell him. Suddenly I realized that I had insulted someone who was giving me money. 100% disclosure was my policy after that.
 Signature Dave Keays
G. - 26 Jan 2006 17:23 GMT > > Excellent points. The other's baggage is something they'll carry > > until they get older and need someone to help them too. [quoted text clipped - 12 lines] > > Compassion is like fire: necessary, warming, and dangerous *** Good way to avoid others. You use a different definition of compassion I guess./G.
> What really gets me are those that require think they are superior because of > their false compassion. Many times they end up hurting others while their egos [quoted text clipped - 11 lines] > took me aside and asked why I didn't tell him. Suddenly I realized that I had > insulted someone who was giving me money. 100% disclosure was my policy after that. G. If you wear a Medic Alert bracelet you could show it to them, and say it's there for Medics if it's needed. Ask if they want to see any moles or scars you have. Perhaps you have a Tatoo they'd like to see. I don't see a reason to tell someone about personal medical conditions unless there's a *risk of it happening often. Otherwise it's none of their business. What else does he want to know? And why? Also in 1980s, if it was photosensitive-generated, CRTs had slower refresh rates than now. You could have blamed it on the screen without their needing to see your EEGs. G./
Dave Keays - 27 Jan 2006 05:13 GMT [snip]
>>> Excellent points. The other's baggage is something they'll carry >>> until they get older and need someone to help them too. [quoted text clipped - 12 lines] > *** Good way to avoid others. You use a different definition of > compassion I guess./G. Which is?
>> What really gets me are those that require think they are superior because of >> their false compassion. Many times they end up hurting others while their egos [quoted text clipped - 14 lines] > G. If you wear a Medic Alert bracelet you could show it to them, and > say it's there for Medics if it's needed. I refused to wear a Medic Alert bracelet. Today I can't say why.
I used to say it made people panic even more and I had a greater chance of ending up in an ER-- "look he has a medical alert on! call 911! start CPR immediately!". So I carried a card in my wallet that could be easily seen by anyone ID'ing me. The card explained my situation, how I wanted seizures treated, and my current prescriptions.
It helped the ER departments (I had nurses tell me that) but I don't think EMTs took the time to ID me like I thought they were required to do. Today I think the whole argument I used stinks. But I don't need it now so who cares?
> Ask if they want to see any > moles or scars you have. Perhaps you have a Tatoo they'd like to see. > I don't see a reason to tell someone about personal medical conditions > unless there's a *risk of it happening often. Otherwise it's none of I was having seizures several times a week so they were likely to see one eventually. The fact that I didn't drive in Southern California was a dead give-away that something was going on. I would be fooling myself to think I could hide it. Maybe the Partial-Complex but not the Generalized ones. I also didn't want to be too pushy since they were my customers.
> unless there's a *risk of it happening often. Otherwise it's none of > their business. What else does he want to know? And why? They had 2 reasons as far as I'm concerned. 1) they were paying me (do you ever read the ingredient label before buying food?). 2) I was at their business amongst both their customers and their employees. I had the power to create a panic, stop production, and drive customers away. Those are grave risks to a company, especially a small business. They needed to know about the situation so they can decide how to handle it.
I had a couple of clients who bulked because of my medical condition. I just decided that I didn't want them as clients so who cared if we never did business. I was lucky that I found out about their attitude problems before I waisted much time with them. But the majority were willing to work with me, and a few even went way out of their way to help. Looking back, I could not ask anyone to do what some of them did.
As a side note: the risks a business takes are even worse now. If I had seizures today, I would have the power to take the persons business away from them. They have more legitimate reasons to discriminate so I am against Americas ADA and "workers rights".
> Also in 1980s, if it was photosensitive-generated, CRTs had slower > refresh rates than now. You could have blamed it on the screen without > their needing to see your EEGs. G./ I'm not sure the connection was made 20 years ago.
I hope you were joking about showing people your EEGs. I guess I would consider that too much. If someone asked me to show my EEGs, I would have had a problem containing rude remarks about where they should stuff it.
 Signature Dave Keays
G. - 28 Jan 2006 15:53 GMT The EEG comment I only used once, not with someone I had to work with. It's a python-esk method to suggest they might be asking for more information than they need (as in it's none of their business). Some people don't realize that if they're uncomfortable with some condition they don't know anything about, other than olde stereotypes. If I was applying to drive a Truck, or an Aircraft, my health conditions are important to them. If it's sitting at a desk, it's not. It might be a subtle? way to suggest the information they are asking about is private in most jurisdictions or manners, and they might not be aware (or care) that they've wandered into an area that's private to me. And good manners wouldn't reward someone for asking about something that's really none of their business, unless I felt it was something I'd want them to know about (as in a friend or someone I'm on better terms with at work or socially). G./
Dave Keays - 28 Jan 2006 23:09 GMT > The EEG comment I only used once, not with someone I had to work with. > It's a python-esk method to suggest they might be asking for more [quoted text clipped - 11 lines] > I'd want them to know about (as in a friend or someone I'm on better > terms with at work or socially). G./ Of course, I'm talking about how I handled the situation. I'm aware that others have a different level of comfort about it.
When something is or it is not an employers business is not clear. The fact that I could be dysfunctional for several hours can affect the said company. They should be allowed to decide what risks they are willing to take; just like I do. Employment is a mutual agreement between two people. Just like marriage is. I don't think I should force a company to hire me nor should I force a woman to wed me.
Honesty was the only practice that made sense to me. Besides respecting others opinions, I refused to accept that my situation was something to hide.
But now I'm more hesitant to reveal my past situation. I only say I was on a "medical hiatus" for a situation that has since been cured.
So we all have different comfort levels and we all have to make compromises. I'm just sharing where mine are.
 Signature Dave Keays
G. - 23 Jan 2006 05:10 GMT Also, those feelings of dread, etc. you described. If you do any searches under http://efa.org or other sites, look at aura , as that's what the feelings are. Some of us get a Deja Vu feeling, others Jamais Vu or may even hear voices or other things, or taste or smell something that's not there. All those are variations of a Simple Partial szr. that many sites describe as the aura. That also can give a clue to area inside where the seizure focus is (where it starts from). G.
Dave Keays - 26 Jan 2006 00:09 GMT Mindy Van Wert wrote:
> Hi there. > [quoted text clipped - 34 lines] > Anyway, I just needed to sound off. I am getting very frustrated here. I > can't drive now, I feel like crap, and I'm tired of people's attitudes. We all feel that way. Starting a local self-help group helped me tremendously. Mine started in my late teens, progressively got worse until a tumor was found and removed the year I turned 40. Now Middle age is my biggest concern.
As far as other peoples attitudes, I found that either a little education or seeing a grand-mal usually shuts them up. Of course I preferred to just have a little chat with the arrogants but not every body is caring enough to worry. Maybe a little chat with your manager/supervisor would help. Discrimination at work can be dangerous to the company. Talk to your local EFA office if it continues.
When not driving, other peoples attitudes, and bad/crappy feelings are the major concerns consider yourself very lucky. At least I was. What about those kids that have several hundred grand-mals a day? Having a couple a week was bad enough for me.
Good luck
 Signature Dave Keays
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