Newly Diagnosed and need some help.

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Lucia
New Member


Date Joined Oct 2005
Total Posts : 8
   Posted 10/1/2005 11:43 PM (GMT -7)   
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... sad  
 
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

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 10/2/2005 5:06 AM (GMT -7)   
Hi Luc.

I don't know your age but your story sounds similar to mine. I was dx'ed after my "1st" grand mal. My doc put me on meds and I still had some partials. Maybe afew nocturnal grand mals but those I can deal with. I am on Keppra 500MG twice a day. I like you am hearing from my new neuro that all of my staring spells when I was younger were most likely absence seizures, not ADD. That is a blow to think you grew up all this time not dx'ed and then boom a GM hits you. In a way I think the "wake up GM" may just be a good thing for people like us to get diagnosed.

The mood swings, depression, lack of energy, memory loss are all normal. Sad to say but true. This is from the E/meds. These meds are very hard, remember they are working on the brain so it all makes sense about the side effects. I know not driving for 6 months is hard. It is so hard, especially on what life style you were used to having. My parents met at a horse stable and got married. Brought me up with a barn and a corral in my back yard. So I grew up with riders. I know it is very dangerous to ride as it is, but to be 6 feet up from hard ground, not knowing when the next sz is gonna pop up, that is a huge risk. I know you love riding. But maybe give it three months until you can tell that you are doing well on the meds. All of this stress going to drive you nuts at first.

In my honest opinion, I think alot of your feelings are very normal for a person who was just dxed. I hope that you adjust to your meds quickly. (it took my a full 3 long months to feel good on Keppra). If you feel you need to talk to the neuro about a med switch or maybe cocktail (combo)then do it.  Just give the drug a 2-3 month run until the side effects go away.
Take care, I hope in my rambling I helped a little
Tracy


 25 years old
Nursing Student


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 10/2/2005 9:03 AM (GMT -7)   
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

Lucia
New Member


Date Joined Oct 2005
Total Posts : 8
   Posted 10/2/2005 10:26 AM (GMT -7)   

Thank you for the replies :-)

It is hard dealing with the radical change in lifestyle without having someone to talk to that can understand.  So you know, I just turned 36 in Sept. The 'Deja vu" seizures, forgot atm what they are called, but that is a good name, started a couple years ago, but not very often.  It was just kind of a wierd feeling and often forgot about it.  I was planning on asking my doc when I had a checkup when my insurance kicked in.  I was in the process of getting a new one, but am currently without insurance...

I know that riding could be dangerous.  I do always ride with a helmet and always have, any fall from a horse even not in a seizure state could be bad.  I have not ridden lately. My neuro told me, well, I dont want you to ride, but I am not your mother...lol.   I actually live on a working horse farm, so this is more than a hobby.  I am the manager.  eyes   We primarily breed horses and do a lot of showing.  I am also a photographer, mostly horses.  I was starting to pull away from the farm more to do more photographing, horse shows, farm calls, etc.  That requires a lot of travel and driving...well, guess I am not doing that now.   Living on a farm we arent close to public transportation, let alone neither are any places I would be going to, lol.

So I am kinda jobless.  I was driving the hour down to my parents 4 times a week as well, since my dad is ill.  My mom has decided to move down near my other sister...in another state. sad

I have always been good about handling emotions, I just do not feel the control now.  I hate suddenly jumping at someone and than go why the hell did I do that.  And of course the depression.  Actually, when I first started the drugs I didnt feel as bad, (well, kinda a high feeling, lol) but the memory problems and zoning out were the main problem.  2 months later I still have it, but they seem a bit better, but now I feel bad, I never seem to feel good anymore...  I shot an event here at the farm just on Thur, a big show (photographed).  Occasionally I looked at my camera and went...ok..what do I need...it was no longer the instinct, I had to think hard.  sigh.  I am not on a high dose, 200 mg of Carbamazepine twice a day.

Thank you all for your responses.  I know I am babbling a bit, I just havent really talked to anyone.

Luc


Lucia
New Member


Date Joined Oct 2005
Total Posts : 8
   Posted 10/2/2005 4:59 PM (GMT -7)   

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. redface

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.... sad

Thank you all for the responses...

Luc


Shannen
New Member


Date Joined Oct 2005
Total Posts : 1
   Posted 10/5/2005 4:27 AM (GMT -7)   
Hello Lucia,
I have had seizures for many years now and have been on too many medications to count. Let me give you some advice though; stay as positive as you can. I believe in the power of prayer and for the past 11 years thanks to God, Dr. Hal Corwin (the best neurologist in the world :) and Depakote, I have been seizure free. I have had grand mal seizures and have been in some very dangerous situations. I had a seizure in the middle of a very busy street, one that caused me to slide under my parent's car, and one while working. I had several more after that. I was told I would never work, get married, or live on my own. Well, I've done all of that and more. I act in shows, write poetry and sing as much as I can. There is hope and help, just believe.

God Bless
Shannen L. Heyman
 
Diagnosed w/ Epilepsy at age 15, now 35.
Seizure free for 11 years
Taking Depakote ER 1750mg
Folic Acid
Fertility Blend
 
Amenorrhea x2 years


pianist995
New Member


Date Joined Oct 2005
Total Posts : 5
   Posted 10/19/2005 3:23 PM (GMT -7)   
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.

luv4Gabby
New Member


Date Joined Nov 2005
Total Posts : 12
   Posted 12/4/2005 8:11 PM (GMT -7)   
Hi Lucia, just wanted to let you know you are not a lone my little girl now 4 has been having seizures for approx. 2 months now & like you horses are her life she was born riding & will probably ride till the day she dies anyway this was her first year actually showing (small fry) she is into mostly western pleasure but enjoys all the gameing to & let me tell you she kicked but this year off to an unbieleavable start her last show was at our local fair in Sept. Oct.24 she had her first seizure kinda scary to think a month before she was running barrels huh? anyway it is really killing her that she cant ride her seizures are no where near being under control but my little trooper still helps with all the barn duties! & she is doing all the groundwork with the bombproof horses for now I told her this is a good oppertunity to practice showmanship! so far its working! take care & hang in there better days are comeing, Jolene

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 12/4/2005 10:48 PM (GMT -7)   

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.

mad mad 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
 

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day


Lucia
New Member


Date Joined Oct 2005
Total Posts : 8
   Posted 2/27/2006 12:20 AM (GMT -7)   

Hi everyone,

Yeah, long time no hear from.  I admit I haunt the boards a lot, and usually read it all, kinda of like a spy I guess, lol.  But don't usually feel like posting much.  But thought I would say hi...Hi!  tongue

I appreciate all the replies back then.  So far I have not had any more grand mals, but the little ones have started back up again, on xmas actually...dang, some present.  The doc wanted me to redo bloodwork in Jan before I was going to come back anyway, so set that up.  Right after he got them he called me up asking if I was taking my medication right, lol....um, yeah doc.  Well, your levels are low, so he upped me an extra dose.  I am now taking 600mg of Carb.  Took more blood and will be seeing him again on March 3.  I have had 2 simples still after the uppage.

I was going to see about switching drugs anyway, but will have to see now.  I was still feeling a bit fuzzy, its hard to concentrate on reading stuff, the words just look all fuzzy and I usually promptly forget what I read.  Fun part is forgeting what something is called, when you know what that word is.  That is the part that is hard when dealing with clients, talk about feeling tarded.  Been trying to get back into working out again, havent much since the first seizure in Aug, but it just seems exceptionally hard.  Not sure why, would think I would feel better working out again. 

I havent ridden since, but do feed the horses when needed.  Everyone gets worried about me feeding them as they see that fuzzy look I get sometime I think.   I actually had one while I was holding a horse, sad , but was able to finish my job, the seizures make me feel wierd and such but I can usually continue moving at least.   Really hoped I could get things settled and get off the farm, work or otherwise, would really do me good I think.  Ah well, I know I am depressed, but extra fuzzy too with the upped meds redface

Hope everyone is doing well ...

Luc


stan49
New Member


Date Joined Feb 2006
Total Posts : 4
   Posted 2/27/2006 8:13 PM (GMT -7)   
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..

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/27/2006 9:53 PM (GMT -7)   

Stan,

I've been on anti-convulsant medications since 1979. (I also have ulcerative colitis which I also take medication for).
For the last few years, I have these staring episodes and speach arrest. I'm aware of what is going on around me but I can't respond. My neoro. says they are petit mal seizures, brought on by stress. It usually strikes after a stressful event, when your defenses are down. If I wasn't on the meds then these would be full blown gran-mal seizures.

I have been on the same meds for 25 years (dilantin and pheonobarbitol) and because of the long term use, It would be risky to change meds because I could have lower brain stem damage.
When I have these staring spells, everybody looks at me funny.

One thing that would happen is if I'm reading, all the words would be garbled for a few seconds.
In my case it's just something that I have to accept.

Randy

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day


Lucia
New Member


Date Joined Oct 2005
Total Posts : 8
   Posted 2/28/2006 12:25 AM (GMT -7)   
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. sad

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
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