18 and stuck with what to do?

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Hi,
To make a long story short, I have been dealing with the fear of having another seizure for quite some time now. I had many seizures when I was younger but was seizure free for many years. I moved away from home at 18under bad conditions and no longer talk to my real parents. The lady I live with now whom is like my mother just found out in the worst possible way that I have seizures. I was not aware nor did I feel this seizure coming. It was not the worst one I've had but to someone who has never witnessed one before...yes, it was scary. I have never been diagnosed with epilepsy but it is very common in my family. So anyways to my point, after this seizure my mom requested I go to the ER...which I denied and said that I was fine. Is there something wrong with this? After all I have had them before. But after having a couple more seizures (which are getting worse and longer) my mom made a doctors appt that I was NOT happy about going to. So now, after the doctors appt Im getting bloodwork, a catscan of my head and going to see a neurologist. I do not want to go through all the testing and the long days to try and find the piece to the puzzle. I am going to lose my license over this and most likely my job. Is it so wrong for me not to want to go? I don't want to find out why Im having them nor do I care really. Its a seizure..... any advice? I may be sounding stubborn or stupid but does ANYONE see it through my point of view?
 

Rae1889

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You cannot lose your job from it. Next time you seize, GO TO THE ER. things will happen far faster and your mother can vouch that this was not the first time, but since you were 18, she could not force you to go to the ER. depending on where you are, the neurologist may not even be required to tell the DMV that you have seizures, there fore your license will be safe. If they are required, then there is a time limit on bein seizure free before you can get it back. This is by far your least worry.

When did they start, and you said you were never diagnosed, but have you ever been to a doctor about the seizures. This could be something as small as a food allergy or hypoglycemia causing this, or as big as a tumor or cancer, so you want to get this all done so they can find the cause and fix it in time. Not to scare you, but this has been the case with people who suffer from seizures.

Seizures can be deadly. For various reasons. You can fall and crack your head open, drown in a pool or in your tub/shower, profuse bleeding, internal bleeding, falling from heights, choking on food or salvia/vomit, suffocation. Or just from the seizure itself. granted this is rare, when help is around. but you can sustain some pretty debilitating injuries and possible permanently damage yourself.

I say it is something you should go get checked out for yours, and others safety. you want to have the best quality of life. and you can decide what to do when and if they find a cause.
 
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Yes, I have been to the doctors about my seizures..but it was when I was younger. All I can remember from that is being extremely ill from the seizure medication and was in the hospital. Not sure what it was either.

They restarted about a month ago and I have had my fair share of injuries from this.

Im frustrated because my mom will NOT let me do anything without someone being right there. I cant go out by myself, hang out with any of my friends all because of these stupid seizures! I refuse to take medication and I did end up going to the doctors who then told me I needed a cat scan, bloodwork and booked an appt with a neurologist. Which again, all pointless because I see no point. I will have to take time off work to go to these dumb appointments and I just dont want to go.
 

Rae1889

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Again, I'd say go. She's worried. and you can give her the peace of mind by going. She'll know that you care about what happens to yourself, as she cares what happens to you.

as for the meds, did they help with seizure control or just make you sicker?

there is a gluten free diet you can try to control them I am going to be starting it this weekend, and it honestly doesnt look as scary and restricting as i first thought. The tests are going to help.

What other seizures do you have? just the grand mals. as there are lots of other kinds you can experiance. most people do not just have grand mals, but rather a combination of absence, simple partial, complex partial, myoclonic etc. This is the person has epilepsy. If this is not epilepsy, such as diabetic shock causes it, hypoglecemia, drug/alcohol abuse, or even a virus, you would not *to my knowledge* experiance any other seizure type activity.

do you have any other underlying conditions?
 

Nakamova

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It sounds like there are a couple different things that are frustrating you right now:

1. Feeling constrained by your mother's concern.
2. Worried about loss of independence and driver's license
3. Skepticism over what the ER, EEG testing, and medication can do for you.

About #1 -- It's great that your mother is worried about you, but it sounds like you need to work out a plan where you have a little more space. It's important to discuss the risks and also weigh them against your need for independence. Keep the line of communication open.

About #2 -- If you have a seizure while driving, you WILL lose your driver's license (not to mention the potential for harm to yourself and others), so it's a good idea to be proactive about finding ways to control the seizures -- even if that includes considering medications.

About #3 -- If you already have been diagnosed with a seizure disorder, you don't necessarily need to to go to the ER after having a grand mal. But it can be a good idea if there's any suspicion of head injury. I know seeing doctors can feel like a major hassle. I never had to see doctors before I was diagnosed, and it's one of my least favorite things to do. But there are benefits to seeing the docs, and risks to leaving your seizures untreated. You say that the seizures are getting worse and longer -- this is not a good sign. You don't want your brain to get in the habit of seizing. The more you seize, the more that the unhealthy neuron networks get hardwired, and the more likely you are to seize again, and again, and again. Believe me, I'm not a big fan of meds, but there are a number of different ones out there, and it can be worth trying to find the right one for you, one that can stop the seizures with minimal side effects. The EEGs tests and CAT scans can sometimes indicate which area of the brain is involved in seizing, and can point to a particular med that might work better. Even without meds, there are things that you can do to be proactive about your health. Try to figure out what is most likely to trigger the seizures -- like stress or fatigue or diet -- and then try to avoid or eliminate those triggers in your daily life.

I hope you get some relief either way -- a seizure is lousy, but so is the fear of having one.

Best,
Nakamova
 

Parker26

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I know exactly how you feel. I had a seizure in class when I was 16. They ran me through all of the tests and decided I have tonic-clonic seizures. It sucked at 16 because I was just about to drive and I had the seizure during the summer. I live in phx and all we do is hang out by the pool. I couldn't get my license and my mom was all over me. My summer was spent in the house. I still had a few seizures even on the medicine. I didn't have a clue about seizures and my dr.s never informed me about them. I was mad the medicine wasn't working and quit taking it. The seizures went away for about 6 years and came back. Had to go through all the tests again just to determine my eeg test was abnormal and I need to take medicine again. I was a Junior at ASU and studying Criminal Law hoping to get into law enforcement. The seizures ruined any chance I had of getting into law enforcement. My future career and my education went down the drain. It killed me and I had no clue what to do. I ended up graduating last year with a degree in Criminal Law, but my diploma is sitting in my drawer. It feels like I wasted alot of time for nothing. It's depressing. I work as a photographer now and travel quite a bit shooting landscapes or meeting clients for shoots. I am scared every day about having a seizure because in AZ you can't drive for 3 months after one.I usually have a seizure or two every November.Sorry about the long response, but I know exactly how you feel. Also, these tests are important and take the medicine. It may prevent you from having another seizure. If you don't like your dr., don't hesitate to find another one. I'm currently looking for a new one because my dr can't spend more then 3 minutes with me during an appointment.
 
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Thanks

Thanks everyone for the help.

As for the medication when I was younger, it did NOT help. I was in the hospital for quite some time getting better. I couldn't eat, sleep or function when I took them...I felt like crap all the time.

My seizures very, at most I just have abscence seizures but as the day goes on and I get more active or tired I start having more and greater in severity seizures. I usually feel fine when Im awake, I have a couple every now and then but when I try to go to bed is when I usually end up having the worst. It's hard for me to fall asleep because of this, I mean a seizure for me is physically exhausting; just my personal experience. But its like my brain is keeping me awake! It's annoying because there have been nights where I have stayed awake all night because of this. I don't really know how to explain my seizures besides that I know when Im going to have one. My feet and hands go all tingly. I lose feeling in my hands and I usuallythave a headache which usually ends up a migraine by the time Im done seizing. It's like my feet fall asleep and slowly but surely it crawls up my leg(so to speak). It's like my feet fall asleep and then slowly my legs start to fall asleep and then that's when I have the seizures. Sometimes I hear a high pitch noise or I smell rubber. Is this all normal or am i going crazy?

See, I have tried talking to my mom about it, but she is a mother and therefore stubborn and won't listen. I've dealt with all of this before (she hasn't) and I know what to expect. She is constantly asking me if I'm ok, it's not that I don't care how she feels but I just don't like the fact that she is riding my butt over this. If I say I'm fine and that everything is ok, I just wish she wouldn't over exaggerate that Im not. You know what I mean?

Sorry if this is long but last night was A LONGGG night for me. Mom stayed up with me because I couldn't stop seizing. Sometimes I get so worked up I just can't calm down long enough to stop seizing. They last anywhere from 30 sec to like 10 minutes. I usually lay down when I feel a seizure coming, either on a bed or on the floor away from objects because I have broken my arm while seizing.

Thanks again.
 

Nakamova

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Hey Shelby, I'm sorry that the first medication that you tried sucked, but each medication works differently, and there's still a good chance that another med would do the trick without the side effects. If you don't want to go that route, then you need to figure out how to make the best of what your current seizure situation is. It may take awhile for your mother to back off. Be patient, gentle, and persistent in letting her know that you're okay.

One thing you might try to help with the nocturnal seizures/insomnia is a pre-sleep relaxation system called the "Delta Sleep System". It's a set of CDs that help your brain generate the good kind of brain waves and help you fall asleep. Another thing to try is progressive relaxation: As you lie in bed, slowly tense and then relax each muscle, starting with your feet and working your way up to your head. Go very slowly and breathe deeply during the process.

Best,
Nakamova
 
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Hmmm well never tried actually doing that. I will try that tonight and let you know how it goes.
Also, I do watch what I eat most of the time. I had my gall bladder removed during the summer so I really watch my fat intake right now.

Where would I find these sets of CD's? Im intrigued in trying these methods rather than medication. I went through hell trying to figure out what was wrong with me when it came to my gall bladder.

It seems as though no matter how much I reassure my mom, she just wont listen to me. I fully understand her concern...but honestly!!!! Any advice from any mothers out there? I know you worry all the time but any thing I could possibly say to ease the tension and fear she has?
 

Chris515

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Hi Shelby,

Nakamova makes some good points - it may be a good idea to see the doc and consider some medication. There are many types out there and the doc might know one that could help you.

Special diets are something to consider as well - in the long run this can be preferable to meds. But for now medication might be your best option to decrease the frequency of your seizures.

As for your mother... she does care about you and is concerned for your well being. But having a smothering mother can be bad too... I had that when I lived at home. Try to communicate always, that is the key to solving problems like this.
 
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Well as far as the medication goes, Im not to sure I want any. I am so frustrated right now. A smothering mother?? You mean over bearing, over protective and just not listening to my side of the story! I just had an argument with her, yet again, about these seizures! I just wish that she would understand my side of the fence. She is just not seeing this through my point of view at all. I can't leave the house, can't do anything by myself....erg! I can't even hang out with my friends. Although my choices in friends are not the greatest and I am not angel myself either but even so, you think that she would trust me enough to make good choices?
 

Cint

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Hi Shelby,

I know it is very frustrating, but I know your mother does care about you and doesn't want anything bad to happen. Can you make an appt. with a neurologist and both of you go together to discuss the issues/fears with the dr. and what to do in case she witnesses a bad seizure? Why do you not want to know or not care why they are happening? Mine started when I was 22 years old and I certainly wanted to know what was going on in my brain. And I tried almost anything to stop them because they nearly cost me my life. Thirty years later, I still have them on occasion.
 

occb

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Your mom may need to feel like she has some control over your condition in order to back down a little, instead of her just feeling like a helpless bystander. Definitely talk to her, but also have her participate in your health-care, but on your terms (not hers).

For example -- if she does the cooking, you can introduce her to one of the diets that are supposed to help with seizure control. Or, if you or she have relaxing hobbies, perhaps you can do them together? Just some ideas.
 

Parker26

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You really need to speak with a neurologist and see what your options are. Why not try medicine? Everybody reacts differently to medicine and you may not feel any side effects. I take 3,000 milligrams of Keppra and it only makes me tired. As far as your mom goes, of course she is worried. What happens if you go out with friends and have a seizure. What if you hurt yourself badly during a seizure. You mentioned that you have broken an arm before. The consequences are far greater without medicine.
 
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Comforting thoughts ease a racing mind

Yes, medication can be an option, I am just to afraid to try it all over again. I was on many types of medication last year for my gall bladder (which I had removed) and it was terrible. This is how I found out I was allergic to morphine. My body is sensitive to medications and I rather wish not to experience a reaction like morphine again...it was terrible.

I don't really want to go because if there is something seriously wrong with me, then I just don't want to know. Is that bad to say? I feel like Im being selfish in saying that my life is my life and I just want to LIVE my life! My mom makes me feel like I have no options to choose.

With regards to going out with my friends, I do not make stupid or irrational decisions. If I felt like I was going to have one, I would make sure I was ok....even if that meant calling my mom and telling her to come and get me. She doesn't trust me and I feel like I am being backed into a corner with no possible solutions.

Any great recipes to try? I think I am going to start a diet and see if it helps. Any suggestions on what to try? I don't eat that healthy now, so I want to see if a change in my diet helps with my seizures.
 
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How would I let her feel more in control? I am in great fear that my mom is going to lose her mind over this! Today when we were driving I had a seizure that lasted roughly 2minutes. My mom feels the need to try and help. Like she told me today, " when your seizuring I wish I could just hold you and make all the pain go away,but I can't...there's nothing I can do!"
I feel her need to comfort me and her need to try and help me but there isn't anything she can do to help me. Is there any way I can let her know that she is of absolute no help to me when Im seizuring?
 

skillefer

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I understand where your coming from..but you need to know something. The reality of the situation is this. If it is epilepsy, and you do not treat it, the seizures may get worse (stronger and more frequent). Seizures CAN kill a person. So although it is inconvenient and scary to deal with it, it must be done. Yes, they got better once and disappeared, at least for a while. But they are back now. And from what you are saying, they are getting stronger. That being the case, it's time to take the bull by the horns and deal with the situation. No more burying your head in the sand.
 
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So what your saying is biting the bullet and just getting it over with? lol

Im terrified to go to the ER after I've had one. I live in a really small town and my doctor hasn't even called my neurologist yet! I was told I needed a catscan but that hasn't been booked either.
 

skillefer

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Pretty much. You have a couple choices:
1. Ignore it.(Basically, keep doing what your doing...) Consequence: Seizures may get worse and more frequent. ( It's called kindling...it's where your brain learns to respond to certain stimuli by seizing.) Status seizure could kill you.

2. See a neurologist. Consequnece: YOu might find out what's causing or triggering the seizures and actually be able to limit the number of meds you have to take, choose an alternative treatment plan, or take meds to control the seizures. With control comes the ability to get your license back, and more freedom.

You are the patient...in your case, you are most likely going to have to be your best advocate. It might be a matter of your doc realizing that your hostile to the entire idea of treatment, and wondering if he should even bother to call the neuro. He can set up appts. and refer you till he's blue in the face...in the end it's your choice. And you are the one that will either live or die with the consequence.

As for your mom...I think she's trying to do the caring and responsible thing. Now...you said your no angel, but you want her to know that you can make good choices. So, now's the time that you can prove to her that you can. Be responsible. Ask her to video tape you having one and then watch it. Yes, they are scary for our loved ones to deal with. But you'll find that the more active you are in trying to get control of it, the less frightening it will be for your mom.
 
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