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Chris_N_G
New Member


Date Joined Feb 2005
Total Posts : 11
   Posted 2/13/2005 9:54 PM (GMT -7)   
Hi, everyone. My name is Chris and I am 24 years old. I started having seizures when I was 18 years old. I guess I'm here because I need to vent. The position I am in right now I find very frustrating and depressing.
 
As I said, this started when I was 18. I had several seizures. After some tests, I was diagnosed with epilepsy and given Valproic Acid to help with the effects. The seizures went away but I was left with constant exhaustion and terrible headaches. After a year of this and further tests, the doctors decided that it was not epilepsy after all, just migraine headaches. Since I was no longer having the seizures I left it at that. Then last year it all started again. I had one seizure last May and then another in August. Since then, the seizures have become more frequent, about one every week now.
 
I always have gotten a warning about 10 minutes before. Weak muscles and an upset stomach.
During the seizure, which I do remember, I get muscle spasms and paralysis over most of my body. Sometimes I am
able to speak, but quite often I don't have the motor control to do even that. After the seizure it is usually a couple days before I recover my strength completely. The seizures last between 2 minutes and 8 minutes in length, which I think has something to do with how tired I am when it happens. I retain my memories from the seizure which is how I am able to describe the symptoms.
 
Right now I have had 3 sleep deprived eegs done with no results, worn a holter monitor for 24 hours. I was even in a hospital when the seizure took place and had an mri scan done 5 minutes after the seizure. The only test that showed up any kind of abnormality was the holter and that was just 2 minor 'blips' in the data readout and most likely nothing at all.
 
For me, the worst of it isn't even having these seizure. I'm learning to work around that. I even drove in the time that I had been having the seizures with no problems. My 10 minute warning sign, which is something that never has failed allows me the time to pull over and put the car in park before anything happens. The hardest part for me is the fact that I cannot drive now, the neurologist gave me strict warnings against it and if I got into an accident, I'd probably be in serious trouble then. I am living with my parents right now because the unpredictable nature of what is happening doesn't allow me to hold a regular job, though I do have a part time job. I want to go back to work desperately. I was training to be an automotive mechanic, and since driving is an important part of the job, I couldn't go back to it even if I could work right after a seizure. My parents are out in the country while all my friends live in the city, which makes things worse even. I miss my old job and I am depressed and I hardly get to see my friends because I can't drive. How do people survive like this?
 
I guess this isn't the best possible introduction of myself...but thanx for reading this anyway. I just needed to let some of this out. Perhaps some of you have an idea of what might be going on?
 
-Chris

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 2/14/2005 6:33 AM (GMT -7)   
Hi Chris I am off to work so I can't type much. I am also 24 and newly diagnosed. I just wanted to send you big hugs and will chat with you later or tomorrow, I just didn't want to leave you hanging. Take care, Tracy
 


Chris_N_G
New Member


Date Joined Feb 2005
Total Posts : 11
   Posted 2/14/2005 4:16 PM (GMT -7)   
Well, thanks for the support. I really appreciate this...just having someone who will listen. I didn't realize how much I just needed to be heard. I don't know if that makes any sense really. lol Last night was kind of a rough night too actually. I didn't have a seizure or anything, but it was one of those depressing nights where I couldn't sleep and all I could think of was how much I just wanted to have my life back! I'm sure that I'm not the only one to feel this way either. I got just over an hour sleep last night.

I've been doing some research too, and the symptoms I have in a lot of ways closely resemble a partial simple seizure. The advanced warning that I get about 10 minutes before is probably not right and possibly the fact that the after effects on my muscles last for a couple days afterwards. My seizures cause muscle jerking over most of my body and paralysis as well and sometimes blurred vision but I remember them and I am mentally normal. That seems very similar to the descriptions I've read of partial simple seizures. I see my neurologist on Wednesday, so thats something I will be asking him about as well as the possibility of trying various medications to control, and I'm hoping to stop the seizures. Perhaps if these seizures can be stopped, I can go back to work. :-)

-Chris

oceania_mom
New Member


Date Joined Feb 2005
Total Posts : 9
   Posted 2/14/2005 4:51 PM (GMT -7)   

Hi Chris,

My daughter has just been diagnosed with epilepsy at the age of 15 and has also been on a valproate type drug. Like you she suffers from  incredible exhaustion on this drug (as well as muscle cramps in her legs and some mental confusion) and we are looking for alternatives.

I wish I had some useful advice to give you but as  we are  just starting out on this journey all I can give you are some  big {{{hugs}}} and encourage you to stay strong as you work out a plan of action that will give you back your life.

All the best,

Jennifer

 

 

 

 


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/14/2005 8:19 PM (GMT -7)   
Chris, I sure hope they can stop these seizures! In one way it is good if you are having simple partials since you get warning to sit or get to a safer place! I hope the neuro gets things controlled very soon. I have one kid who has simples. The other has generalized seizures.


hang in there and keep working with the doc to find good answers. Many with seizures can still work and lead full lives!

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 2/14/2005 8:25 PM (GMT -7)   
You will regain your strength and return to work. It is a hard thing trying to figure out where your seizures are coming from and the right med/doseage to control them. It is a very depressing thing when you are hit hard with not being able to work or drive. Being 24 and newly diagnosed was the hardest thing for me. I was in a state of shock for about 3 months. You will get over this bump in the road. As you know, you are more then entitled to have these feelings, they are nothing but normal. Feel free to vent here anytime and ask whatever questions you have. These forums are a great way to learn and connect with others in the same boat as you. Hope your appointment with the neuro goes well. Please keep us updated! Tracy
 


Chris_N_G
New Member


Date Joined Feb 2005
Total Posts : 11
   Posted 2/14/2005 9:56 PM (GMT -7)   
I am actually excited to see the doctor. Maybe I have unrealistic expectations for things. Its just that its been more than 6 months with no real results yet. And since he had this appointment set up just last week, I would hope that he is now going to do something other than just more tests. I'm well aware of the long process that it sometimes is to identify the problem and prescribe treatments. I just feel like I'm going crazy waiting. Being in the auto service industry, a big part of life was driving and I can't wait to get behind the wheel again! :-) Thanx for your support! It makes me feel better just to know that I'm not alone here. :-)

-Chris

AmandaJane
Regular Member


Date Joined Feb 2005
Total Posts : 30
   Posted 2/15/2005 12:49 AM (GMT -7)   

Hey Chris - I feel ya' right now darlin.  I haven't necessarily been diagnosed yet...My first appointment with the neuro is the 21st.  I've been having partial focal seizures of the temporal lobe since I was a little girl...but didn't know what they were until about 3 years ago.  I had my first of 8 grand mal seizures in Oct 2003.  It's been a long, hard year and a half, but I've got to get through it.  I've given myself no choice.

Best of luck and keep in touch.  Holler if you need a friend.  smurf


Peace, Love and Happiness
AmandaJane


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/15/2005 12:09 PM (GMT -7)   
Chris,
Sorry I can't offer any suggestions but only tons of my own experiences, some very similar to yours.  As a result I recently lost my job to medical retirement, then disability and had my drivers licence suspended.
 
I was diagnosed with epilepsy in 1979 and now my seizures are controlled by meds.
 
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 2/15/2005 12:23 PM (GMT -7)   
Chris,
I totally know how you feel- I'm 19 and was diagnosed at the age of 15 although my first seizure was when i was 8. I had a similar experience about the doctor thinking i was just having migraine headaches but now, we believe they were simple partial seizures. I typically have tonic clonic seizures though. I haven't had any simple partial seizures on any of the meds I've been on. I hope they find out a way to stop the seizures and make it so your not so tired from the drugs. They don't know why I have seizures at all- I've had all normal tests too (crazy how that works) and that can get really frustrating. I had to wait a year after everyone else to just get my license and then about every 6 months i loose it after having a seizure and i get it back 3 months after that. each state is different though on how much you wait. i'm just glad wisconsin doesn't make you wait 6 months to be seizure free or i would never had my license! well, i hope your appointment goes well next week and no worries about venting here- we're all hear to listen! :)
~Jessica
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday


Chris_N_G
New Member


Date Joined Feb 2005
Total Posts : 11
   Posted 2/15/2005 3:52 PM (GMT -7)   
For those of you interested, so far I have had blood tests done to eliminate diabetes. I've had 2 sleep deprived eeg tests done within the last month. I wore a holter monitor for 24 hours in December and I had an mri scan done as well. By some fluke chance I had a seizure in the hospital the day of the mri and they scanned me 5 minutes after the seizure was over. It came up 'normal', which according to the emergency room doc I saw that day, is perfectly normal for this kind of thing. I had a cat scan done when this thing first started, almost 7 years ago, and I had a sleep deprived eeg then too. At that time I saw a neurologist who said it was migraines. He wasn't very useful and didn't seem to want to really dig into what was happening. It just sorta went away for about 4 years, the came back last year. Since it has been back I have seen 2 neurologists. The one I am seeing right now is the one who is having all these tests done. He is actually trying to find a cause instead of just chalking it up to migraines.

I am up in Alberta, Canada. :-) Free health care...but I think we wait longer for some things.

I really hope they start doing something fairly quickly though. I had another seizure today...its only been 4 days since my last one, so its possible that they are becoming more frequent. I guess I'll see when I have my next one. The muscle spasms lasted for about 5 minutes and the paralysis lasted a couple minutes after that. Its normally not any longer than a couple minutes, but I haven't been sleeping well for the past few nights so that probably has a bit to do with it. They usually are worse when I'm tired already.

-Chris

SheenaGirl
Regular Member


Date Joined Feb 2005
Total Posts : 77
   Posted 2/17/2005 5:02 PM (GMT -7)   
Hi there...I am a new member too ... and fairly newly diagnosed as well about 10 months. I live in Ontario Canada and am going through the same situation with driving and work. Right now I am going through the confusing process of applying for medical EI, CPP and ODSP which although confusing we are very lucky to have!!!! My best advice to you right now is that I know you dont want to face not working as I dont ( I have been crying every day sitting here at the computer) but you have to take care of you first....your health must come first....and it takes a while for the benefits to be processed so get that in order and look into what you need to do to apply and what you doctor needs to fill out form wise and what you need from your employment......this will take a lot of stress off you in the long run, trust me! And as my doctor told me once the seiz. are under control by the meds you can go back to work and be safe and healthy. Take good care and remember take it one step at a time....that is what I am trying to tell myself and I know it is hard, I too am having daily seizures as well. Hang in there and keep posting I have found these forums have helped me tremendously the past 2 weeks I have been off work. Good luck!
TWILIGHT ....love generously...praise loudly...live fully!! (elias porter)\
CP TL Epilepsy, IBS, Obsessive Worrying/Anxiety Attacks/Migraines
 


Chris_N_G
New Member


Date Joined Feb 2005
Total Posts : 11
   Posted 2/17/2005 5:26 PM (GMT -7)   
Thanx for the advice. :-) I am definitely trying to take care of my health before I go back to work. I know that the way it is right now, I wouldn't have a hope of getting through even a week of work in my trade. I think that sometimes I want it so bad that I convince myself that if I just go back to work, things might happen to work themselves out or something. Like maybe if I had a seizure, I would have lost that 15 minutes that it takes and jump right back into whatever work it is I happened to be doing. I had lost some patience, but since the doctor has prescribed some medication, I think I've found enough patience to hold out a bit longer. It'll really help if the medication actually starts working too. Then I'll know, its just a matter of time and I can have my life back! :-)

-Chris

SheenaGirl
Regular Member


Date Joined Feb 2005
Total Posts : 77
   Posted 2/17/2005 9:16 PM (GMT -7)   
Yah, I tried to work through the seizures and it just made things worse and the seizures got worse , now i am exhausted, stressed out, having more seizures...its a vicious cycle. I a just glad that I can apply for the benefits and hope that I will get enough for my spouse and I to exist on until I can find a job that I can do. But you definetly have to listen to your body and allow the medications to be able to do their thing so the seizures can stabilize first. Having a doctor and a neurologist that will listen to you and that you can really talk to is very helpful to. Just remember to always report any new signs/symptoms asap. Take care and good lucK!
TWILIGHT ....love generously...praise loudly...live fully!! (elias porter)\
CP TL Epilepsy, IBS, Obsessive Worrying/Anxiety Attacks/Migraines
 


c.michele
Regular Member


Date Joined Feb 2005
Total Posts : 32
   Posted 2/18/2005 6:15 PM (GMT -7)   
The numerous tests we go thru with normal results can make you want to scream. PCP's don't have a clue when it comes to seizures (at least that's what I've found) finding the right neuro that will listen can amke all the difference when it comes to treating you. In the intital phases before I was dx I started to keep a journal of events, foods, activities, emotional and stress levels. It proved to be very helpful in my dx and my neuro appreciated the record (since we all have a tendency to forget things at times).
I can relate...I am fully aware fo my surroundings and hear and feel everything...just trapped inside my body convulsing and not able to speak. After about 10 min I'm in the recovery phase...which can last minutes to days depending on how severe. Total mental clarity usually takes about a day. The lifestyle changes are very difficult, but they do get better...you won't always be where you are today.
Here's a thought...you may have migraines that are throwing you into a seizure, I have both and I can tell you that it's happened to me before. I have an aura as well so I can generally figure out if it's a migraine and/or if it will turn into a seizure. Since you have aura's as well, keep in tune with your body...sometimes we're our own best dr. (then of course we take that info to the professionals).
It does get better...so give your self time to heal and by the way ask your friends to come out to you for a visit.

cm

Chris_N_G
New Member


Date Joined Feb 2005
Total Posts : 11
   Posted 2/20/2005 11:24 PM (GMT -7)   
Well, I've been on my medication a few days now. I'm having the strangest side effects. I'm tired all the time right now, which is normal, but when I first take the medication for about 3 hours I get tired but I get strangely hyper as well...I can't sleep for 3 hours after I take it, and I'm supposed to take it at bedtime. heh Its probably just something related to being really tired, so I'm guessing that since being tired is supposed to be a temporary thing, it'll probably go away with the that.

As far as going on disability goes, I keep reading a lot about that. I realize that there are some people a lot worse off than I am, and I'm not trying to offend anyone here. If you see disability as your best option then go for it, but for me, it'll have to be one cold day in that really hot place before I ever go on disability! I AM going back to work and I AM getting my auto service tech ticket! :-)

I really appreciate the support and various suggestions that I have recieved. Its good to talk with people who know how this feels.

-Chris

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 3/7/2005 6:31 AM (GMT -7)   
Hi Chris, I was reading your post and it brought back alot of memories for me. I started having seizures when I was in elementry school, was dignosed at age 11 and I had sezures for over 28 years. On June 11,2002 I had epilepsy brain surgery for my complex partial seizures, since the surgery I haven't had any seizures, and I now know what it feels like to be free! But for years Chris I couldn't work due to I would start having seizures and I would have to leave my job, and I didn't have transportation. When I was in high school I never told my friends, which was very hard and lonely not having anyone to talk to. But the great news now is I am a H.O.P.E. mentor for the Epilepsy Foundation here in Northeast Tn, I have a presentation to due on March 16th at my daughters high school and the high school that I attended many, many years ago, lol. I will be doing Epilepsy Awareness and trying to educate teachers on what to look for and how to help someone having a seizure.
I was wondering could you explain for me how you feel when you have a simple partial seizure? I wish you the best and I hope that your neurologist will help you get the seizures undercontro. My prayers are with you.

Many Blessings,

Mercyme/Cindy

41/brain surgery
seizure free
Lamictal
northeast tn
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