Newly Diagnosed and need some help.

Hi everyone,

I am new to the boards and just recently diagnosed with epilepsy.  On Aug 1st I had my first, er well, second grand mal seizure.   It was a classic grand mal and I believe I had one a few weeks prior to that, but with not all the symptoms.  I really wasnt sure on Aug 1st, but kind of thought I had. I didnt wake up til 1pm and crawled out of bed feeling out to lunch and if someone had stuck an axe in my head and a hole in my tongue.  My friend knew something was wrong right away and got me into my doc's.  They ran a CT right there, she put me on drugs to keep me "safe" and set me up for a neuro appt and an eeg.  Had an MRI thrown in there for good measure after the first visit.  At the second visit we had a long talk on all the results and what we were doing.  I also realized than that the wierd deja vu feelings I had been having from time to time before all this, were seizures as well...  

I was kept on carbemazepine and of course told no driving for 6 months.  I work with horses and the neuro was not to keen on me riding, which I can understand, but some things I wont give up and I already wear a helmet.  As most of you know this isnt easy, than add in dealing suddenly with no driving and getting used to the drugs..ugh.  Added stress is that my father is ill and I was helping with him and feel that I have let him down.

The neuro told me to give the drugs another month, as I was having some trouble with them, mostly that drugged feeling and memory seems pretty lacking and hard to concentrate.  I seem to have adjusted a bit, but am still having memory trouble and it seems now my moods can be all over, but definately depressed.   Which yes, with all this I expect that, but I am usually pretty good at handling stress and such, but now I seem to be unable to and also snap at people or I will be talking and loose track of what I was saying, all the sorts of things that I read here and all over. 

I can change and try other drugs but are they going to be any better?  I at least have not had another seizure.  I just am not sure if I should just deal with what these are doing or try something else which may or may not be better...  My roomie has tried to be helpful and looks out for me, but she knows I am not the same person.  Any suggestions?  Just need someone to talk to that understands cause it is definately hard to explain... and to not freak people out if you say the word epilepsy to them, lol... 

Thanks..

Luc

Lucia, I am so sorry you have started having seizures and now the meds are so hard to adjust to! It sure can take a long to get used to them. You can ask the neuro if taking vitamin B 6 is safe to try to see if it helps the moodiness. Some neuros advise it for kids, especially with another seizure med, Keppra. I just heard a neuro at conference say she is recommending it more for anyone with a mood problem....

It stinks that you need these meds and then you have to deal with side effects too. YOur neuro is wise to tell you to try waiting it out before trying another med. Seizure control is a good thing if you can tolerate the side effects. You can also ask if Trileptal would be easier to tolerate, it is in the Carbatrol class of meds but sometimes more tolerated....


Best wishes!
Ginny

Yes Mandi, I have started to think of that recently.  But kind of hard to do that if you cannot get to the appointment, lol.  Kept hoping I would adjust to the medication and be all normal and stuff, but definately not normal atm.  I really hate trying to talk with someone and suddenly forget the name of what you were discussing, or something else.  Really bad when I am at a show dealing with the horses and talk to people about the breed and than kind of zone out.  All I need is people thinking the person they are talking to is...well..not all there.

At least reading in this forum is telling me I am not alone and kind of join the club, you are all feeling a lot of the same things.  It is just such a radical change in your life and everything you did you cannot do and you kind of feel helpless ya know.  My friends treat me all wierd too, the ones that know.  I think they are waiting for me to seizure at their feet.  Just hate all of the feelings and wondering where my memory is or went and if I can control my moods anymore.  I have always been lvl headed.  I almost think the seizures themselves are easier to deal with than this....

Thank you all for the responses...

Luc

Lucia,

From my own experience, I was just only diagnosed last March, after having one grand mal seizure in Aug 2004, and a second complex partial episode in March. I had a CT scan, MRI, eeg, and had my heart monitored with this little machine and some sticky things I wore on my chest for 2 days, all after my first seizure in August, and none of them showed any indication of epilepsy, so I was allowed to drive. After the second seizure, and diagnosis of epilepsy (apparently it's quite common to not know the cause), I was put on Keppra, worked up to 1500 mg a day (500 in morning, 1000 at night) in a month, and I was pretty irritable and depressed, and dizzy and tired that first 3 or 4 weeks, then I got more used to it, though I still get more tired easily, and need more sleep than I used to, or I am pretty tired. I haven't had another seizure since then, and I am now switching to Lamictal, gradually over 8 weeks, as it can cause a bad rash if not worked up to slowly, because we want to get pregnant again sometime next year, probably early summer or so, and Lamictal, my neurologist said, has been shown in the last few months to be quite definitely better for pregnancy than any of the other ones.

I was also not allowed to drive for 6 months, and I live in a rural farming community also, so I have some idea of what you are going through. I was fortunate to have neighbors who were kind and willing enough to drive me places when I needed it, and at the time, my husband was working out of town, so he was gone either all week, if he stayed there, or till 8:30 pm if he came home, which he did the last month or two of working there. I don't know much about riding horses, but I know that coming to forums like this one has helped me out, knowing there are other people who are going through this, and many who don't even know why, like me. For my part, it's been pretty difficult trying to adjust to all of a sudden having this diagnosis that even the doctors don't know a whole lot about, and that in many cases, has an unknown cause, but will require medication for pretty much the rest of my life, and medication that basically always had at least mild side effects.

So I'm glad you were able to find this place, it helps me too, to talk here, because I don't really know anyone in my personal life who has been diagnosed with epilepsy, and many people don't really understand it, as I didn't before I learned what I know now. Hope this helps a little, at least.

Hi Lucia,

I know exactly what you're going through.

I read your post and all the replies and it sounds sooooo similar to my own situation but I was forced to take another approach.

My name is Randy, I'm Canadian. Music runs in my family and starting from age 9, I was playing drums and guitar with proffesional bands. Up until age 21 (1979) I was a singer/songwriter, music teacher and a studio musician. My only dream in life was to make a good living with my music. 

Well, all that had to come to a stop.

I was sitting at my desk at my P/T job when I had my first seizure. All I remember from that point on was waking up in the ambulance on the way to the hosp. After going through several tests and then seeing a neurologist, the tests showed that there was epileptic activity in my lower tempral lobe. He then persribed Dilantin and Pheonobarb (still on today) and the seizures were under control.  I was even able to keep my drivers licence.

(I also developed Ulcerative Colitis at the same time, the Docs. say the two are connected)

One major problem though, the pills were severely messing up my co-ordination. I walked like a drunk, slurred my speech, my own family was embarassed to be seen with me.

Since my co-ordination was so bad, I could no longer play guitar or drums and I had to give up teaching.

I was so depressed, I could no longer fulfill my dream, now what was I going to do.

I had to make a career change. I was putting in job applications all over but I had no other experience.

Finally I got hired on by the Federal Government as a courier and mail clerk. I worked my way up to Administraion Manager for the Unemployment Insurance Office for 21 years and then 9 years with Veterans Affairs.

My condition was getting worse with age, no seizures but the meds were blocking my learning ability so I couldn't take on extra duties.

As a result of this, my employer(The Government of Canada)

put me on disability insurance for one year, then medical retirement at age 47. 

I had to learn to live with my disability and work around it.

This is just a look at it from a different perspective.

Randy

Hi Lucia,I was wondering about those epoisodes you have when you forget a word.Is it kind of like it has been erased from your memory or just put so deep that you cant retrieve it?Do you expierence the same thing when reading and just come to a word that you know that you should know but it is as if that word simply has no meaning at the time?the reason I ask is because  these symptoms are part of the Aura that I have always had.I find that if I can lie down and sleep until I wake naturally all those weird feelings will be gone and the grand mal seizures never happens..

Hey Stan,

I do not really consider it an episode. My forgetting a word doesnt go hand in hand with reading. I breed horses for a living and sell offspring. So say I am talking to a client and talking about this horse I know really well and suddenly I forget the horses name. Or I forget the word saddle or bridle. I know darn well, what those words are or the names of horses, but for that short time I cannot remember it. I will get frustrated of course than, but usually it will eventually come back into my brain.

The reading part is that it has been hard to read. I love to read. I have not been able to really read. I just seem to have trouble concentrating on the words on the page, or when I do try very hard and read what I can, I almost get a bit dizzy when doing so. But often have to read things several times to have the comprehension I once did.

I know...some babbling. I stopped talking to my family and updating them as my father is very ill and now bed ridden, so my mom is really stressed and I just dont want to add to it. Being stuck here on the farm kind of isolated has added to it all. So forgive me....

Luc