Ps I should add that, in addition to my aed's, i've been on ritalin since late november. Technically, it's probably not adhd-- or not j_u_s_t adhd, (though that's how i'm dx'd in addition to the epilepsy). A more accurate explanation is probably an executive functioning deficit which is not all that uncommon in people who have had epilepsy since early childhood. (ritalin is also helpful with this, however). In addition, I was recently dx'd (via an mri) with hippocampal sclerosis. I often have a hard time with word recall and have enormous difficulties with name recall because of this.



Ritalin and similar stimulants (such as adderal), unfortunately, also have a tendency to lower the "seizure threshold." I knew that when I started taking it but am needing to re-enter the job market and because of my problems with concentration and memory, I have had tremendous struggles in keeping jobs. (job interviews and decisions about disclosure about my health is where the stress is coming from lately, btw).

I talked my doctor into trying me on ritalin again by telling him that I was willing to put up with the brief/mild simple partials if it means that the trade-off is that I can get back to work. It never occurred to me that simple-partials might also bring on postictal depression.

When I see him next week, i'm going to talk to him about trying straterra instead, (which is used for adhd, but is not a stimulant and does not seem to effect seizures). We tried it last summer and it didn't seem to help much. Though it helped me to concentrate, it also seemed to make me a bit hypomanic (hyperactive/on a high), but I was only on it for 2 weeks-- and straterra takes a while to get into the system.


Aiwl

Although I haven't heard of the term before, thanks to your elequent explanation I now know what it is and can give you some kind of reply.

Please allow for the fact that I only joined today so if I offend in any way I apologize inadvance.

I have now been told my epilepsy is intractable.
However I also suffer from complex partials.
I would say I suffer from simple partials too, but if you pick up a book in the us and then the uk they will tell you 2 different things as to what the diagnosis is, and again if you look on the internet.

I completely understand your "frustration" with the fact that other people don't understand what is happening..Its like they are for example "on the outside of a two way mirror." something like that everyone has their own way of discribing it.

I too seem to suffer from the same sway in mood and emotions with my seizures, and it sounds similar to yourself they can go to an extreme.

I also take topamax
i came off tegretol a long time ago though as it made me extemely aggressive.

Cogentparadigm

p.S. Electric or acoustic?

Hi,
i think I can relate to what you're saying. Over the last number of years I have found that my moods and emotions have totally been affected by my seizures. For me, they're tonic (sometimes tonic-clonic I guess...To the point I lose conciousness) although the seizure lasts only about 30 sec. It takes a lot out of me and all of a sudden (once I come to and realize what's going on) it feels like my life is completely upside down. I feel like a failure, "why did I let this happen?" I feel embarrased wondering what people would think if they knew (other than my family and close friends) I feel dependant on others to get me places and totally feel out of control of my life! It is an awful feeling, accompanied by "is this going to happen again soon" like I can never get ahead of the game. I guess what makes it hard (although I realize it's not that bad) is that these seizures happen only every 18months it seems over the last number of years, but that's why I say it feel like I can't get ahead. I just make progress and then bam, back to square 1.
I was depressed almost 2 years ago. It was post-partum, however, it caused a seizure basically out of the blue. At this point I hadn't even realized I was depressed but after the seizure I felt myself slide downhill really fast, very obviouslly becoming quite depressed. I thought about my funeral wondering if anyone would bother to come. I figured life would be a lot easier on a lot of people if I died. But then I would go through in my head who might be affected by my death and realized that many people would and would be very upset. I went over and over this many times and decided that I was a valued person despite not valuing myself. At this point I knew I needed help and I spoke with my family doctor and I got my life back shortly thereafter with some meds and councelling.
Although there are worse things in life, sometimes there are days when it feels like the whole world is working against you, nothing goes right and you're completely out of control...And it all feels so embarrasing at times and perhaps feelings of sadness or depression may feel unjustified. But they're not. I'm sure there are many people around you who care for you and the best thing you can do for yourself is talk to them. If you feel totally lost on that talk to your family doctor about help. Councelling did me a world of good and I am just your everyday person who needed a little support and an ear to listen.
I hope you find a way soon to heal.

Alice,
i nowhere your coming from, especially about how people treat you. A good friend of mine once told me unless you "really" knew me wouldn't know the majority of the time when i'm having a seizure.
I too, can keep on doing things while having most of my seizures, ( dishes, cleaning, talking, crafts, etc...).
The thing that really upsets me the most is when others accuse me of not feeling well, when I am fine..... Or when people try to tell me my limits.
Having epilepsy is a major pain in the butt, and depressing. For the most part people who don't have it have "no" clue how much it effects our lives.

There are times where I can cry out of the blue, or just want to scream.....
I belive its just everything all rolled up togethere, the having to deal with the seizures, the meds (aren't side effects a wonderful thing), our health in general, other people that makes alot of us feel this way .....
Especially, since its not easily fix by doctors..... And they basially play a geussing game with alot of us (me for one).....
Jill

Hello everyone.
I feel the same as you also. I am 21 yrs old. I was working as a manager at woolworths, my fionce suffered from depression, so I sent her on a holiday of relaxation while she was away I wasnt coping well at work myself and I couldnt stop crying one day so I went to the doctors.The doctor put me on zoloft 100mg, for only one weeks trial to see how I felt, my partner came back and one night she decided it would be a good idea to try and commit suicide, she almost succeded.I came into the room at the right time and called the ambulance.

The next day I was talking to her and I was crying asking her "why" then all of a sudden I went all stiff. And fell into my first ever grand mal seizure. It continued into roling grand mals. The ambulance came to get me then and said I had what was called an acute stress reaction, due to the events from the night before. I was referred to a neurologist everything was normal, it seemed I spent 15minutes in his office for nothing, to only be told I was a fake and that I needed psyciatric help. I was so upset, not knowing why all this was suddenly happening to me.

I continued to have seizures for a month before going back to my local gp my gp said I had a form of epilepsy. And I was started on an aed (tegretol) I continued to see a shrink and she said I was not mentaly ill.
6 months has passed I cant work. I am currently on 2000mg of epilim a day and 600mg of tegretol a day.

I saw another neurologist and he said I am a temporal lobe epileptic
and that I suffer from some (pseudo seizures, partial complex seizures and grand mal seizures)

i am still going in for more tests because I am not getting anybetter. I really hate this epilepsy thing,

and I am trying to stay stress free.
I guess we all have an underlying problem aswell, and ours is stress/depression.

I feel the same way. My life changed 6 years ago. I'm now 44. I lost my job 3 years ago and I don't drive anymore. It started when I left my husband 6 years ago. I rent now i.M on s.S.I. I want to leave my boyfriend, but then I feel dependent on him. My son still lives at home going to college, I feel like there maid. Ifeel used. I'm tired from the meds, tired of going to u.C. Davis every 3 months and them changing my meds around. Tired of getting rides. Tired of crying at any moment. I.M on topamax.
The only thing that saves me is being a volunter at assit living home 3 days a week. I help the activity director and hang out w/ the old people. They have alzihimier and dimencha I can't spell. I love it there. I'm only there 12 hrs a week but there's a reason why we have this. You guys just have to pray about it. I'm always broke since I left that guy I was married too, and I asked god why do I have this? There has to be a reason, my reason is to be w/ those old people and to be w/ this little kids in my neighborhood, and go across the street and watch the baseball games because there parents don't go there to watch. Thats why i.M here. You guys probably think i'm crazy. But I have nothing else to do. Its better then sitting in this caca hole apartment. Think about waht we have. Jamie

I feel the same way. My life changed 6 years ago. I'm now 44. I lost my job 3 years ago and I don't drive anymore. It started when I left my husband 6 years ago. I rent now i.M on s.S.I. I want to leave my boyfriend, but then I feel dependent on him. My son still lives at home going to college, I feel like there maid. Ifeel used. I'm tired from the meds, tired of going to u.C. Davis every 3 months and them changing my meds around. Tired of getting rides. Tired of crying at any moment. I.M on topamax.
The only thing that saves me is being a volunter at assit living home 3 days a week. I help the activity director and hang out w/ the old people. They have alzihimier and dimencha I can't spell. I love it there. I'm only there 12 hrs a week but there's a reason why we have this. You guys just have to pray about it. I'm always broke since I left that guy I was married too, and I asked god why do I have this? There has to be a reason, my reason is to be w/ those old people and to be w/ this little kids in my neighborhood, and go across the street and watch the baseball games because there parents don't go there to watch. Thats why i.M here. You guys probably think i'm crazy. But I have nothing else to do. Its better then sitting in this caca hole apartment. Think about waht we have. Jamie

Well, I haven't posted here in a while, but I must say that i'm doing much better.

I did have a few complex-partials this spring (3) which is unusual for me because I usually only have simple-partials, but even still they were very mild and none of them generalized which seems to be a new thing for me because my cps's have been generalizing since my temporal lobectomy in 1988. (the only negative thing about the surgery).

Some changes have been made in my meds and in my opinion, they are for the better. In february, we discontinued ritalin. My sps's decreased by about 25% with this change but I was still having a fairly significant amount in comparison to the number I was having before taking ritalin last november. (they were fairly well controlled prior to this time). With this change, I also saw a decrease in the depression, though some other changes were occurring as well (in circumstances), and i'm guessing that because of this I had a bout of depression in april. (it's really hard to say what causes what, isn't it)?

A few other changes that have been or are being made is that we are aiming for monotherapy with (generic) tegretol. This was my request but I gave my doctor some very good reasons and he agreed:

1. I've lost a significant amount of weight recently. (40 lbs since last august and probably 25 of those lbs just since february). Topomax can cause problems with appetite loss. Strattera can as well and since much of this weight loss has been since february, my guess is that the latter of the 2 has had a major roll in my weight loss. (mind you, I don't mind losing weight, but i'm losing it awfully quickly and just am not eating very well. I'm also very limited in what foods i'm eating anymore. Many foods just don't taste good or I don't find them appetizing).

2. Money. I'm not working and one big hurdle is that if I start working, I will lose my medicaid. It's a catch 22. My meds cost about $400 a month. I get no aid at this time beyond medicaid, housing assistance, and heating assistance. (no cash coming in or food stamps). I have too much money on hand to apply for many things and just squeak in to get medicaid. (in most states, I wouldn't even be able to rec'v it). The only income I have is child support, but it hasn't been regular lately. Sometimes it is. Sometimes it isn't. (i can't count on it though and depending on it to come in only adds to my stress). I don't need added stressors when it comes to worrying about money. For this reason, I wanted to get off any expensive meds I was on. (topomax and strattera). We also changed my tegretol xr (expensive) to generic tegretol. If I should lose my medicaid because of a job, I will now not have to worry about whether or not I can afford to buy my meds because they are not terribly expensive anymore. (considered applying for some drug assistance programs-- and may have to consider that in the future, but wanted to try to simplify things first).

3. Side effects. Beyond the side effect of appetite loss, topomax also has cognitive side effects. I was noticing this. I took a test in early april and did absolutly horribly on it. I normally do well on tests too. (scored 136 on an i.Q. Test only 4 years ago). It's like i've dumbed down. Part of the problems was I had trouble following the directions. How in the world am I going to keep a job if I can't follow directions for a simple test? I read where topomax can cause problems with the cognitive functioning in the frontal lobe and where people taken off of it have significant improvement in this area. Certainly isn't helping my problems with attention and following directions any!

Strattera also can cause problems with high blood pressure in adults. I began having problems with hbp while taking ritalin. I'm still taking a diuretic for this. Besides, if discontinuing topomax will decrease problems with cognitive functioning in the frontal lobe, perhaps I won't need the strattera. There are also thoughts of returning to ritalin (if thought necessary) but trying it at a lower dose than I was taking this past winter as I seemed to do ok (no simple-partials) when on 10mg a day but had trouble when taking 20mg a day. (money is again an issue and ritalin is inexpensive).

I'm still in the process of decreasing the topomax. When I made the first drop, I was having many many simple-partials an hour for about 3 days. And they weren't mild ones either. They were the scarey kind. That was bothersome but it was only temporary. I intend on making my last drop more gradually by decreasing only half a tablet for 10 days at a time (50mg) instead of an entire tablet (100mg). I start decreasing my strattera the end of this week.

I still have some bouts of "the blues" but no major depression. Not since last february. I still think it was because of all the simple-partials I was having because on the days that I had a whole bunch, (a cluster), I would just cry.

~alice in wonderland

p.S. I play the acoustic guitar. I play a variety of difft types of music. The song i've been goofing around with lately is, "carry on my wayward son," but I also like to play country, bluegrass, gospel, christian contemporary, 60s folk (peter paul & mary, kingston trio, etc), irish folk (tommy makem, clancy brothers, irish rovers), 60s/70s pop, jim croce, and especially john denver music on it.

Even more than the guitar, i've been having a ball playing my banjo. I have a 5-string. I mostly play gospel and bluegrass on it. Songs like "lonesome road blues," "foggy mountain breakdown," "dooley," "i'll fly away," and "i saw the light."

i've been playing both a lot lately. (i play them on paltalk which is a chat that uses microphones). I over-did it at first. (got a bit obsessive), but I think it has also helped me with my depression.

Oh, I wanted to add 2 links but they are about impossible to post on this board. You have to use a little extra effort to read the links. (you can't just click on them or you'll get nowhere). Copy and paste each link up above in your address box and then make sure all the letters are lower case before you push "go" or "enter."

~aiwl

epilepsy and depression:
http://www.Epilepsytoronto.Org/people/eaup date/vol9-4.Html

high bipolar rates seen in epilepsy population:
http://emeryneuro.Com/high_bipolar_rates_s een_in_epile.Htm

After reading, I have a question? Medication. How much do they cost?


From where I stay, it is the most expensive. Especially for those of us who cannot find a job. It also depends on the type and the amount that the sickness requires.


Also at the current economy, what the companies want are brainpower. They want creativeness from the people that they employ causing retrenchment. Stress, pressure are also being given to the remaining manpower. These also cause more new sickness to envelope from the way I think eg. High blood pressure, diabetes, etc.

you might consider contacting your local "vocational rehabilitation" office. They work with people who have disabilities helping them to find work.



~alice in wonderland