I'm new to this. Kind of long but I need advice.

[allie510]

Hi. I am very new to this being that I was diagnosed in late july or early august of last year with epilepsy. I don't have seizures every day or every week or even every month, but in the summer of 2006 right before I got pregnant I went on a job interview and I woke up that morning feeling very jittery and anxious and as the day progressed i just got very light headed as I went in for my job interview I realized that I was having a hard time understanding the questions being asked and I was answering them completely wrong the second I realized that something was wrong (the look on the face of the man that was interviewing me was priceless) I passed out and hit my head on the sink that was in the room ( i don't even know why there was a sink in there ..i was in a pharmacy) and hit my head on the concrete floor. I had a seizure and the man said I was out for at least 2 minutes and that my seizure lasted only a few seconds.

I woke up and I was just very scared and shocked and felt panicky ..like i had to run away from the man or something and for a second I didn't know if he had hit me and I fell or what had happend. Then I remember he was asking me a question and I got lightheaded went to reach out to grab onto him because I felt everything pulling away from me ..after that i don't remember having a seizure. This man was very scared and for some reason told me to wait outside the pharmacy while he called the paramedics because he said I wasn't talking right and that he felt there was something very wrong with me. I tried to leave and he wouldn't let me.

I had an EEG at the hospital and it showed nothing...they told me I was just dehydrated. I got pregnant forgot about the situation and last year right after my son was a year old I caught a horrible stomach virus but again I woke up feeling very odd that day I had a very bad headache, I woke up in a very bad mood. I went to work and left early because of my stomach. I tried to keep myself hydrated and the next thing I knew I went from having a bad stomach pain to an even worse headache I asked my brother to stay with me in the bathroom because i just knew something wasn't right with me and as I was vomiting I woke up to paramedics around me. I don't know what happened but my brother said I passed out for a second and then tried to get up as described before and when I lifted my head up off the floor I went into a seizure. The paramedics came in and asked me my name and date of birth ..I knew my first name, not my last name and gave them the wrong date of birth. I had other signs of seizure such as loss of bladder and I panicked in the ambulance because I some how didn't know where my son was and for how long he was gone my blood pressure was going up and down.

Then I had a full blown seizure at work one day I was fine went outside to smoke came back in and sat down at my chair and was about to log in and the next thing I knew I was talking to the paramedics again. It hasn't been as bad for the last few months because I went to see a doctor because I was at risk of losing my job (which i have since lost due to not being able to attend because of not feeling well) I had a seizure in my sleep last month in front of my cousin.

My neurologist made me feel like a complete lab rat, I feel very embarrassed that this is going on and I want it to go away, I haven't taken my medicine unless i wake up not feeling well ...I have been ignoring this and it's because I have had an MRI which came back fine, I've had EEG's, EKG's and numerous other tests and they have come back fine... the neurologist says that I have Complex & Simple Seizures along with Pseudo-Seizure induced by stress.

I just feel very overwhelmed by all of this I finally made another appt. to see another Neurologist because the neurologist diagnosed me (someone who did not see this coming, who has no idea what this is, and is 23 years old with a child) with one sentence and walked out of the room and came back with a prescription and to see him in 3 months.

Oh and he took away my license which I live in a place that has no way to get around if it's not by car (no transportation and I live on a mountain top) and I have a small child that I have to support and care for on my own. I really don't know what to do because I know that when I go to this appointment they will take my license away again due to the fact that the last doctor (which works in the same practice as the new one) stated that if I reported even one more seizure he would take my license away again. Everyone tells me I should apply for SSDI because i cannot work without a car and I just keep feeling overwhelmed and have a very this is not happening to me right now kind of attitude.

I need to speak to anyone else going through this and esp. a parent who has gone through this kind of sitaution (no way to support their child because of no lic or to sick to work etc.)

I am also on Trileptal*?* (ocarbaz....) and it's 300 2x a day. * lost almost 10 lbs in one month after taking this for 5 months (july-dec) I stopped taking it. Even though the dr. swears that this was not a side effect from the medicine ..I stopped and I stopped losing weight..... again the feeling of being overwhelmed and lost.

I keep having "auras" and nothing is happening and then waking up with numbness in my face, my face was swollen a little last week, tingling in my hands and feet and my mood swings are horrible. I don't even know why this is happening (with the mood swings)

I just keep hoping that this is a very bad dream and I want to wake up like right now. My life was so normal and nothing was wrong ... what if this is something that just happens from time to time .....and not epilepsy????

Please give some advice ..any is great.

 

[wowthissuxass]

I feel where you are coming from, just look at my screen name. There is no doubt that having epilepsy is a tough pill to swallow. The only advice I can give you is to get on the medication, and try to find a way to mentally accept what is going on. I was diagnosed i June of last year, and I have not fully moved on either. Just know that there are many others like you out here (as noted by this website and others like it).

Good luck!

 

[Nakamova]

Hi Allie --

This is the a good site to be at -- you'll get plenty of good advice and solidarity. It sounds as if you're in need of a better neurologist/doctor than you have now -- one who will take the time to explain epilepsy, and also the side effects of medications. You touch on a few different points, but just to address one -- you ask "What if this is something that just happens from time... and not epilepsy?" Epilepsy is basically defined as having had more than one seizure. So if you're having seizures from time to time -- well, that's epilepsy (this can be the case, even if it hasn't shown up on an EEG). HOWEVER, there are many different kinds of epilepsy. Some doctors call it epilepsies plural because of this wide variation.

Some of the things you're experiencing sound like medication side effects. Despite what your neuro said, weight loss is often a side effect of seizure meds, as well as mood swings. Not everyone has the same side effects, and the side effects can also change as the body adjusts to the medication. The meds are very powerful, and if you are taking them you need to do so consistently. In some cases, stopping abruptly can CAUSE seizures, and tapering on or off too quickly can produce other side effects. So definitely make sure you are getting good medical advice, and check in with your doctor if something feels wrong or if you have questions about what you are experiencing.

Good luck!
Nakamova

 

[flinnigan]

Your in a very scary place right now and it will get better. Knowledge is power and there is tons of knowledge here. We will all help you get through this .First it sounds very much like Epilepsy to me. Second let us know where you live and maybe someone here can get you a name of another Neuro. I've had two and they've both been great I'm lucky. If they don't spend enough time with you they're probably not worth your time. I learned this through a serious illness with my son.

I'm in an area with no transit also and was self employed. I've closed my business and my husband, who was my partner, has gotten a part time job. I've recently applied for SSDI and will fight vigorously to get it that was a hard pill to swallow. We're loosing our home lost our business and I have 3 kids to care for. But we're making lemonade. Its all you can do. You will make it. Think positive.

Panic, dehydration, stress, diet that "funny feeling" are all a part of it. Many Dr's just blow off these symptons as women issues. It took me 8 years and actually having a seizure in front of my OB/GYN to get the right referral.

I'm still far from controlled but am far better than so many and am filled with hope.

Ask anything you need to and we'll do our best to point you in the right direction.

Lastly try not to think of this as a bad dream rather a chance to live new life and bring incredible change to you're life. I'm so much closer to my family and friends and have weeded out those who truly weren't. The hardest thing for me to ever do in my life was be vulnerable and ask for help and this forced me to do just that.

 

[Nakamova]

Allie --

One more thing:
I was on a seizure med that made it hard to eat (and also affected my moods and concentration). The resulting low blood sugar actually caused a seizure, and I ended up switching to a different medication.

Trileptal side effects listed online do include loss of appetite, and a number of other related symptoms, including increased seizures in some cases. The swelling you experienced may be signs of an allergic reaction too, so it is definitely worth following up on.

Best,
Nakamova

 

[alivenwell]

Welcome to the site!
That sounds all too familiar to me. I wonder if the anxious feeling you experience is a drop in the glucose/sugar level which may also be contributing to your weight loss. It might be a good idea to regularly monitor your sugar levels with a glucose monitor, especially in the morning. I suspect that since you haven't eaten all night, that the sugar levels are extremely low.

It's probably a lucky thing that you haven't had the severe seizures during your pregnancy.

The other factors I'm reading into your post indicate a very high level of stress. Stress alone can contribute to seizure frequency. To take care of a kid alone or with some assistance from your brother and not have transportation is a highly stressful situation.

I personally moved into a smaller town which had extensive bus transportation, at least two doctors nearby (including a pediatrician for my son), a selection of grocery stores, a mall, a daycare and a drug store all within walking distance.

 

[allie510]

Allie --

One more thing:
I was on a seizure med that made it hard to eat (and also affected my moods and concentration). The resulting low blood sugar actually caused a seizure, and I ended up switching to a different medication.

Trileptal side effects listed online do include loss of appetite, and a number of other related symptoms, including increased seizures in some cases. The swelling you experienced may be signs of an allergic reaction too, so it is definitely worth following up on.

Best,
Nakamova

I experienced the swelling while off the medicine. I was going to suddenly start again tomorrow but i'll just wait until my appt. and speak with the doctors about everything I'm dealing with. Thank you so much for your post. You have no idea, sometimes I get the feeling that certain people in my family think I am making this up because like i said it doesn't happen often i think like 6x total and in front of a few people and strangers so with that said it's hard to explain when I wake up and having a horrible mood swing or feeling anxious and like crying for no reason and confused the way I suddenly have the last 9 month or so. It's probably weird for my family because my behavior is changing so much ..its hard for me to cope with can you imagine my family? I mean the day after my "big" seizure at work I was so confused and upset because I was having such a hard time making sentences I got angry at my brother for leaving a towel in the bathroom that I cursed him out and I broke the door to a closet in my room, then when that scared me i started crying ( i don't have an explosive problem like that at ALL usually talking is more than enough for me if that) when I told the doctor he looked at me like I was stupid and said that's normal after a seizure, you should have been in bed resting not walking around cleaning. I was like really? well im sorry I didn't know that.
I just feel like my family is stuck between being scared that I'm going to hurt myself and is she really going through this because it doesn't happen everyday. It's getting to a point where I got into an argument yesterday and started gagging about to vomit and shaking and broke out into sweats. I never get like that ..I am a pretty strong girl.. I mean arguing is nothing. Now its like my body can't cope with me being even a little bit upset. and I don't talk about how I feel with anyone because I'm too embarrassed, angry and feel like it's really not happening. I don't know ...but thank you for your post it made me feel better to see other people talking about it other than a doctor.

 

[paradise survivor]

Boy do I know how you feel!! First of all, yes you should apply for SSI and fast and when they deny you, as they will, fight it!! It is your own money! You have a legitimate disability. As for those doctors, well I could tell you some stories but I think my gastro/intestinal doc said it best when he recently broached the subject of abdominal seizures. He asked me if my neuro was 20 or 90. Appearently my neuro said he never heard of such a thing,period! My gastro guy said, "you were right! he doesn't listen". As for the meds, tred carefully. Docs love 'em cause they don't take 'em. It has taken 12 years of guessing to finally end up with a coctail of Phenobarbitol and Primadone. But I only take the pediatric dose. It does not do 100% but I can function and quality of life matters:woot:

 

[BuckeyeFan]

:cheers:

Welcome to CWE!

:cheers: