I need Help. Please read and try not to judge.

[Annie0989]

I came here because I don't feel like I have anyone to talk to about my seizures. I had my first seizure when I was 18 years old. I have a variety of seizures. The seizures that I usually have are Grand mal.

I am now a wife and a mom and I need to take care of my little girl. I get so afraid that I will have a seizure by myself because my husband works nights. I'm afraid that I will be alone and sometimes it takes me a while to be able to get up and walk. I hate being the "Poor Me" but I'm so tired of this. How do you do this everyday? And I do not want to scare my toddler if I do have one.

How I "Cope" is trying to forget about it. But the HUGE mistake that I have been making ever since I had three seizures in a day when I was 18 and my doctor at the time wasn't doing his best to help me. My father was very upset with him. I was taking 97.6 mg of phenobarbital. After my father called him, he prescribed me to take two 97.6 tablets.

Ever since that day, I take more medicine than prescribed. I take just a little more than I'm supposed to. The reason why is because I think that my doctors don't know as much as I do about my body. I know my body and I can't trust them. They don't know my body completely and how complex my seizures are. How my right foot goes numb and twitches at night, how my legs feel numb and heavy, and how I have grand mal seizures and sometimes my eyes stay open the whole time. They don't understand it and it scares me.

The doctor that I have now is gracious, patient, and supportive. She is awesome and I am blessed to have her. But I keep falling into the pit of taking more medicine than prescribed and she's given me plenty of chances to redeem myself and to try again. This last time was the last straw. I'm supposed to pick up my medicine next month but now I am out. I HATE disappointing not only my doctor but myself. And I know that it is dangerous to take more than prescribed and that I should trust doctors. But who here has been in my situation where you feel like you just can't?

The last seizure I had was November of last year and I was NOT taking more than prescribed for months. I had my seizure at 7pm. I couldn't sleep until three in the morning because I was scared that I would have another one because I get two-three in a row most times. I took a little more medicine to make sure that I didn't have another because I needed to watch my little girl. This sounds so messed up. I can't be taking more medication than prescribed around my little girl and I can't be having seizures in front of her. I feel hopeless.

No license, no baths, no hikes, and many other things that I want to do but can't.

I just wish that it would go away. How do you cope with this? I need help. I'm in my early twenties and I want to find out some way to not feel as miserable as I do now. I don't want to be depressed and I want to be a happy and healthy mommy.

 

[LJ-Bain]

No judgement...that's for sure. When medication helps it's so easy to want to take a little more when a seizure does surprise you. Even when you know better. My sister who has epilepsy as well (we must be genetically enhanced) does this too.
I'm so glad that you have a Dr. now that you can openly talk to about this. I can only imagine that taking too much medication you run the risk of dealing with more side effects than necessary.
It is difficult to cope. We deal with stuff that most of the population doesn't have to.
It's hard to keep your sense of humour and your sense of hope but thankfully there are good days as well as bad days.
I am a mother too. I have 3 kids aged 1yr, 2.5 yrs and 5.5 yrs. They have seen me have many seizures because really, I can't help it. I have seizures every day. It has become a part of their everyday life and world. I'm sure they will grow up and then suddenly realize that not all mommies get the "twitchies" as they like to call them.
They sometimes get scared by them but most of the time they find them to be an inconvenience. The other day we were getting ready to go to the library and I had a seizure and my eldest simply got frustrated. Ah mom. Is this going to be a long one? Aren't we ever going to go to the library?
They adapt. I talk to my toddler and kindergartener about them and see how they feel.
I have had to teach my eldest how to dial 911 and I have to arrange for extra care for them because I am not always the safest person to be caring for them.

However, I get simple/complex partials not tonic clonics. I sometimes can't move for 1/2hr later on the floor though. I've adapted because as you know, as a mom, you can't suddenly stop being a mom.

Of course you don't want your daughter to see them but it is a part of who you are. They are nothing to be ashamed about. Maybe having a plan in place in case of emergency could set your mind at ease.
I hope talking about it to us has helped. We certainly understand!

Have you talked to your Dr. about the fact that you are feeling this miserable? Depression can be a beast and overwhelming.

 

[rich956]

:e:Greetings

Well youve come to the best place in the NET.we all have chapters in our lives where were unsure of certian things . The members here dont judge ,its that we understand.please feel free to check out the forums:twocents:Theres vest knowledge floating around here,and were pretty cool too:woot: so welcome......:bigsmile:

 

[Annie0989]

LJ-Bain, you are awesome! I was afraid that people were going to rip me to shreds making me feel even worse about what I'm going through. I can't believe that you deal with it everyday! Now I feel like I don't have it that bad but to each their own. You're babies are young and it's Inconvenient to have it happen all of a sudden! It's out of our control and that's what makes me furious. I love being in control of my body. Before I had my first seizure, I never drank alcohol or did any drugs because I wanted to take care of my body and to be in control of what I do.

My doctor had a sit down with me and told me that I need to try and adapt to this change in my life and how it's a part of me now. That's scary but it's painfully true. My seizures are controlled. I have one maybe 6 months to a year. That's amazing but when I have them I freak out everyday like I'm going to have one that night. Not being able to be calm and be my normal self almost ripped apart my relationship with my husband. Phenobarbital isn't for me but Lamictal allows me to feel like the good ole me.

How do you feel when your kids get frustrated about it? When ever my siblings freak out and look at me like I'm transforming into a werewolf, it really angers me. I have an appointment with a psychiatrist but she thought that seizures didn't hurt. But I feel like they do. I feel like my body is bending in abnormal ways.

I'm so afraid to tell my doctor because almost every 3 months, I let her know that I took too much again. How do I stop doing that? Does your sister still struggle with that?

THANK YOU Soooo very much for helping me out. It's nice to talk to someone else with the same condition. I'm glad that I joined the site.

 

[LJ-Bain]

Once seizures arrive in your life it is difficult to adjust and realize that there are some things that are out of our control. Our bodies are a gift and I know that I certainly took my health for granted before everything changed 4yrs ago.
I'm glad your seizures are controlled! But of course the sense of the unknown is difficult to live with. You're always wondering when the next one is going to come around.

I'm on Keppra and it makes me a bit moody and dizzy when they change my dose but I think my husband should be dubbed a saint for everything he has to put up with!
Communication is key. I let him vent guilt free every once in awhile without getting my back up because even though I have to live with the seizures he has to pick up the pieces and fill in the holes. Which is harder? I'm not sure!
The psychiatrist didn't think seizures hurt? Really? Some of them don't I'm sure, there are so many different kinds but they are exhausting. Physically and emotionally. Your muscles truly get a work out. Some people get injured and bloody tongues are the norm it seems.
Do you just take your pills right from the bottle? Or do you arrange your doses in a daily labelled pill container, set up in a.m./p.m. doses? My sister started following her dose when her seizures became controlled but I'll have to ask her. Maybe someone else here has the same struggles you do! We'll see who speaks up!

Welcome to CWE. It's helped me alot already and I've only been here for a month!

 

[Cint]

Hi Annie,

I've had epilepsy now for over 30 years, with CP and TC seizures. They started when I was in my early 20's, too. I also have two now grown children. When they were growing up, they witnessed many seizures, CP and TC's. We lived 1,000 miles from any family, plus my husband (we're now separated) is a pilot, so was gone a lot of the time, so my kids had to see and deal with a lot of seizures. They've seen their "mommy" taken away in an ambulance because of TC's. I had brain surgery, to no avail, and have taken way more than two 97.6 grams of meds. At one time, my epileptologist had me on three AED's, plus an anti-depressant. Yes, it was difficult and I couldn't drive and wanted to just cover my head every day, but I couldn't. I always told my kids that epilepsy is the same type of condition like asthma, my son suffered from, nothing to be ashamed of. Just one more thing in life some of us are dealt with, although it doesn't seem fair and some people don't understand.

Hang in there.

 

[Annie0989]

Sounds like we both have amazing husbands. My husband actually arranges my doses but I haven't been telling him that I've been taking a bit more of the Lamictal. It really stresses him out when he finds out. I hate that. I've had long talks with him about it but he gets depressed and frustrated about it. My doctor said that I could qualify for having surgery but my husband isn't supportive about it. He says that when I have a seizure, he's afraid that I won't come back and that I will die but it's not likely for that to happen. I think that it has to be harder to for family especially our husbands to go through it. They want to help us but they feel hopeless. Men like to fix things and my husband doesn't like the thought of him not being able to fix my epilepsy.

Please do speak with your sister! Thank you!

 

[Cint]

Annie & LJ,

It does sound like both of you have amazing husbands! Must be nice. Mine was in his own world......

 

[LJ-Bain]

LOL! Men DO like to fix things. You sound lucky that he is such a sensitive guy. It also sounds like you have to take care of him a bit too! You want to tell him and be honest but you don't want to stress him out either. Tough call.
Whenever anybody mentions "brain surgery" it sounds like it's equivalent to "rocket science" or something. It's scary! There are people here who have had it though! VNS implants too, and DBS implants. I think I got the initials right.
Thinking about the possibility of death is scary too. But we all have a 100% chance of it. Not to make light of it of course.
Whew! I am off to bed! I'll talk to my sister for sure.

 

[LJ-Bain]

Cint...I'm sorry that your husband was not the sympathetic soul to you! You've been through so much and you deserved someone who should have stood by you thick and thin. His loss though, right? I bet you were and are an amazing mom who continues to show the true meaning of the word strength.

 

[Wobblez]

No judgement here Annie! Welcome to the best place for epilepsy info, support and a good laugh. When you take the extra Lamictal, does it actually help? It may be worthwhile finding out if there is a pattern and seeing if the doc is happy for you to up the dose just during those times.

Can you sit your little one down and try to explain what happens to you so she doesn't panic? Can you role play it and talk her through it? Maybe give her a demonstration so she isn't so shocked. I know it sounds odd but I think it would help. Can you give her a little job, like sitting next to you or giving you a pillow? It may not help you but it could give her some feeling of control and remove her helplessness. Do you have neighbours you can call? Do you get warnings?

 

[Annie0989]

When I take 400 more mg than prescribed before bed, it helps a lot but my doctor said that 600mg is the max that she will let me take a day. When I take just the 600mg, my right food goes numb and I have a twitch like seizure. My doctor diagnosed me with the generalized seizure, only my foot twitching and extremely cold to touch. The twitching is also a warning that I may have a grand mal seizure that night. The plan is to get off the phenobarbital and take only the Lamictal. Then go ahead and take another medication along with the Lamictal. But whenever we go down with the phenobarbital, I tend to get a few seizures. I've been on phenobarbital for 4 years. So I'm hesitant to go down but the Lamictal is strong enough to allow me to go down with only one to two seizures. But like everyone here I Hate and Loath seizures.

I'll talk to my doctor about it but I'm afraid to provoke her. I hate when my doctors get upset with me.

My daughter will be three in a few months but she is very bright. I could try to demonstrate to her and show her what she should do if it happens. It's just scary. She has seen me have one but my husband was there to help me. She was just laughing and she wanted to touch me haha Not funny but she wasn't scared just curious. I think that she thought that I was playing a game.

I have neighbors across the street to call and I do get warnings but just seconds before I actually have the seizure.

And Cint, I second what LJ-Bain said <3

 

[jgeekie]

Hey Annie;

Judgement is not someting you will find here, so don't be concerned about that. Everyone here either shares your problems or cares for someone who does. I haven't been here long, but the shared experience from the community has been extremely helpful to me, and I'm sure you will find it the same.

It is easy to get depressed about having E, and the complications it presents for daily life. I defy you to find someone who has epilepsy that has not looked in the mirror and said "Why me?" at some point in their lives. The thing is that the situation that you are in and makes you worried and depressed might actually be a help.

Here's what I mean; It was easy for me to simply carry on as normal and just ignore my epilepsy when I was single and I felt that my seizures really didn't seriously affect anyone close to me. Of course that is wrong, but it took the support from a wonderful woman to make me realize that. Now I find I can use that as motivation to get my life in order and keep this thing in abeyance.

I understand not everyone has a situation where the seizures can be managed or contained like mine were but I found that knowing that I had people close to me that I did not want to burden simply made me look harder for a solution to my problems. I found my situation vastly improved with dietary changes and certain supplements in addition to the meds. I found those myself. Things aren't hopeless, and the knowledge that you understand your body just makes investigating all possibilities easier.

In terms of your family, especially your little one, I think Wobblez has is it. Talk to her. Explain what's going on and give her a job. Teach her how to use the phone if a seizure is bad, and you fall, for example. My sister, who is 8 years younger than me, told me a couple of years ago that having to learn about what she should do if Jay "falls down" taught her responsibility at a very young age. She wasn't much older than your little one the first time she held my hand while I was on the floor. She says that having to deal with this from a young age made her stronger and made the relationship we have better.

Jay

 

[Nakamova]

Hi Annie, welcome to CWE!

Don't be shy about talking to your neurologist about what you prefer for your meds. Yes, they may get upset and angry, but they work for you, not the other way around. I actually had a similar issues, but the other way around -- I took less than my neuro wanted me to. Like you, I feel I know my body well (after 12 years of seizures), and know what will control my tonic-clonics. It took a while, but I was able to "train" my neurologist that I knew best in this case -- and if I didn't I was still prepared to take responsibility for anything that might happen.

I suggest you discuss with your neuro your preference for the higher Lamictal dose. There are folks who need more or less than the established range in order to achieve seizure control. Ask what the potential side effects are, and what you might need to watch out for. Maybe you can compromise on what the increment is. (I take my Lamictal in 25mg pills, so it's easy to be precise). It's important to be very consistent with your meds, and not to "top them off" when you are feeling anxious. A consistent dose is safer, and more likely to result in consistent seizure control.

Best,
Nakamova

 

[Cint]

Don't be shy about talking to your neurologist about what you prefer for your meds. Yes, they may get upset and angry, but they work for you, not the other way around.

It took a while, but I was able to "train" my neurologist that I knew best in this case -- and if I didn't I was still prepared to take responsibility for anything that might happen.

A consistent dose is safer, and more likely to result in consistent seizure control.

:agree: This is one thing I always tell other patients: the doctors work for you, so don't be shy about discussing your medications and wishes to him/her. Plus, you live in your body and know it better than anyone and how you feel.

My neurologist eventually worked with me and listened to me. She actually would ask when changing meds or doses if that would be ok with me.

 

[MaryK]

Hi Annie and welcome: I am new here too and as you can see with all the the supportive comments this is not a judgmental forum. I agree that maybe another "heart to heart" with your neurologist might be in order

I take phenobarbital and have for many years. When first diagnosed, I was so frightened I would take 1/4 of a tablet more on occasion. Although epilepsy remains the same, there are so many services available now. You mentioned counseling. That also has changed from years ago. No one thinks a thing about going to counseling or switching counselors until you find the right one for you and your family. I have been in counseling for different situations over the years and have found it very helpful. Also, your muscles are tired and achy the day after a seizure.


If I read your original post correctly (5th paragraph) it sounds like you are not due to get your seizure meds until the first of the month and that you are out of meds. If I read this correctly, please check with your neurologist about an early refill. Did I misread this possibly and the"out" is that you are not with this neurologist anymore? (sorry did not sleep well last night so a little fuzzy this morning).

Annie, you sound like a wonderful mother and wife who only wants the best for all. Be proud of your honesty and willingness to look for answers that are the best for you and your family, and your ability to search out and utilize the tools available for you personally to cope with your epilepsy.

Take care,
MaryK

 

[acpollard2010]

Nobody judges here for the most part we either have epilepsy or know someone who does.dont ever be shy ask a way and I have been in that position and it sucks im having to leave y state to get new dr. and suport system is key dont have one and dont feel bad bout anything its epilepsy

 

[Annie0989]

Thank you everyone for the support. You gave me a boost of courage to talk to my doctor. @MaryK I have four days left of medicine. I'm going to be out of medicine. If I was taking the correct dosage I wouldn't have to refill until next month but I messed up again :/ I promised myself that this time I wouldn't but I have a huge panic attack and stay up until I take a the 200 mg of Lamictal at night.

Thanks everyone! My spirits are definitely lifted. Wish me luck. I'm going to email my doctor.

 

[qtowngirl]

Hi Annie,
I'll throw my two cents in as a few concerns popped up right away. Not judging, just worrying.
It is not uncommon for the body to become somewhat immune to the drugs we're on, so if you're taking a higher than normal dose, though it does lessen the seizures, I would caution against it. If your doc won't have you over the 600mg there's a reason, and it is possible a time will come that no dose she prescribes will work. Many of us have had a 'breakthrough' grand mal which requires upping the dose or going off the med completely, and I just wouldn't want to see you have one when you are already taking more than you can get your hands on.
The other concern is the plan to start another drug soon. From the sounds of it it isn't decided yet what it will be? It is not uncommon either to be on two AED's that in one way or another affect each other. For example, I am on Carbamazepine (Tegretol) and Lamotrigine (Lamictal), but the carb. lowers the effectiveness of the lam. by about 40 per cent. This was prescribed by an epileptologist so I don't have an issue with it as my seizures have lessened but I do keep it in mind. What I'm getting at is some drugs can go together but only at certain doses, and if you are already taking 1000mg against doc prescription it is taking a risk without knowing now what the next drug is going to be.
Your doc HAS to know everything so that the right measures can be taken. I would hate to see your seizures get worse or you go through nasty side effects because she isn't aware and able to inform (every three months isn't enough communication if she literally doesn't know how much you're taking).
Again, not judging, just worrying. All the best...

 

[RobinN]

Hi Annie - welcome
I was wondering if you have ever tried Magnesium for your leg twitches?
You might consider trying that without the increase in meds, and / or perhaps a Epsom Salts bath (with someone close by) because that has magnesium in it and it helps to relax the muscles. It is perhaps a more natural way to achieve the same results.
Just a suggestion.