Long story I know

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aaron2209

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Hi guys,
This will probably be a long post as I have just found this place and wish to share my experiences with you and maybe get some hints or insight.

As mentioned in my other post, I don't have epilepsy myself but my girlfriend of 3 1/2 years was diagnosed in Oct 07. Just a random tonic-clonic seizure out of nowhere one night. She did have "weird" spells happening the day before which now we realise was a lead up. At the time we obviously didn't know what was going on.

I don't know if it can be mentioned here but we believe marijuana had been causing the tonic-clonics. She used to go on benders occassionally and at times smoking literally every waking moment. There wasn't an issue while she was smoking, it was a couple of days after having stopped that the seizures would kick in. Usually 2 or 3 in the same night.

Being new to it all, I rang the ambulance probably more often than I needed to but it scared the hell out of me and I didn't know what else to do.

The 2 years following the diagnosis she refused to face it so continued her life as if it never happened. Prescribed Tegratol first, when that didn't work she went onto Lamictal. Taking it at different times of the day and sometimes missing it all together. Smoking away then having seizures which drove me so friggin nuts. In a way it was easier for her because she obviously didn't remember seizures and didn't have to watch someone you love having one. As I said, being new to it scared the hell out of me every time. Basically no progress in these 2 years. Tonic clonic seizures every month.

Fast forward to Jan this year. Another big bender and a couple of days later on the 26th Jan 3 tonic-clonic seizures. It must have then clicked in her mind that she can no longer deny the links between weed and the seizures. It was hard for her because it was her one way of forgetting and not stressing, which i was able to relate to as I drink a bit and loved my cigarettes to calm me down and zone out.

Nearly 4 months now of not smoking and oddly enough no tonic-clonics! I am so happy about this but it seems another kind of seizure has developed. She started having random bouts of twitching, confusion and dizziness. We spoke to her neurologist and he claimed they were panic attacks, which I am open to as she does have anxiety and depression and the fact that epilepsy was now causing her so much distress, her panic attacks were manifesting themselves in this manner. She didn't want a bar of it and took it to mean she was faking and making it up.

She is still suffering these symptoms but slightly different as she now sometimes simply collapses. She is still awake and aware, just no energy to get back up and mumbles quite a bit. She is currently on 50mg Lamictal in the am and 200mg Lamictal in the pm. Due to the two years of no progress we are only in the early stages of finding the right meds.

What's more worrying at this point is her attitude towards what she has been dealt and what that is doing to her moods. As I mentioned she suffers depression and has for many years, so when epilepsy got thrown her way it has made things 10 times worse.

I don't know what i'm looking for here, if anything, just wanted to get stuff off my chest as at the moment I feel so useless and helpless. Have to just sit by and watch and hope changing meds, dosage and seeing a psychiatrist, psychologist, neurologist will all somehow magically come together and work out for her.

All she can say at the moment is "I just want to be fixed" and "I can't live with this forever" thats it.

Sorry for so much info at once and it's probably all over the shop but that's how my mind is working at the moment lol

Cheers
 
Hi, Aaron,

It must be so frustrating for you to have your girlfriend have such clear triggers, and she doesn't face up to it. Maybe she finally is, if there has been no marijuana for the last 4 months?

We all have different triggers for our seizures. One of mine is alcohol. I recently said that it's not worth it - not even one drink. Seizures are horrible and they need to be GONE. But I didn't even realize it was such a clear seizure trigger until a couple of weeks ago. I think I was in denial, too. Either that, or the lack of a good seizure diary until recently prevented me from realizing it.

Encourage your girlfriend to keep a seizure diary. It makes the relationships between actions and seizures very very clear. She can keep in a little book, a piece of paper, or online at www.seizuretracker.com. Record what she eats and when, medications taken and when, alcohol, drugs or other triggers, and seizures including a description of their type and duration, and how she feels afterwards (postictal).

Until your girlfriend accepts total responsibility for her actions and how they affect her health, there's only so much you can do. Just loving her and supporting her does a lot. :)
 
Actually I see your girlfriend as lucky because she knows what her main trigger is. The problem is not finding what it is but changing her habits.
 
@Endless,
Hey, thanks for your reply. She hasn't smoked for 4 months now. She did keep a diary but her denial was so strong at first that she simply refused to believe it which like I said I could relate to. I think we are now at the stage of her learning to accept what she has and how she needs to handle it.

@epileric
Hey. I kind of agree in that she is lucky that she pretty much knows what her trigger is. I have mentioned to her that it is better than not knowing at all and still trying to find out. But at the moment she absolutely despises my optimism about it all and is convinced she is doomed to a life of misery because of it.
 
Doomed to a life of misery because of the epilepsy, or because she can't smoke marijuana?

The feeling of doom is a natural part of the grieving cycle. It's part of acceptance. We've all felt it. It's okay she's feeling it - it's normal. The important part is for her to move on and move into a feeling of action and empowerment in her own situation.

I felt that feeling of being doomed for awhile. It was sad, hard, etc. And my family wasn't very helpful. Neither were my friends. My family was still in the "I've never heard of temporal lobe epilepsy and it sounds like you're crazy to me" stage. (Better known as denial)

Hang in there. It's all going to get better.
 
Endless, Now that you mention it probably feels doomed because of both. Mainly the epilepsy though. She thinks these initial stages of finding the right meds is how it's always going to be. I think the depression part of her is playing a big part in this way of thinking.

I am hanging in there for sure. No way am I letting Epilepsy ruin mine or her life.
 
Mention the site to her...and mention the fact that theres several of us here with multiple degrees, married, kids, careers...yada yada...things that are considered "normal"... :)
 
What a wonderful friend you are to her. Thank you for your concern.

What striked me, as a former drug and alcohol therapist is people and docs dont' realize how serious DETOX and withdrawal are for mj along with any other drugs and alcohol. Does she drink too?

Also.. she may have a seizure disorder on top of this drug problem. It would be good for her to see a psychiatrist who specializes in ADDICTION often called an Addictionologist. AND have them consult with a neurologist.

You'd be surprised how toxic marijuana can be..esp when you say she smokes all day at times..imagine what this does to her brain/lungs etc??

Let us know ok ??

Warmly, Jan
 
Jan, what a good observation.

Withdrawl on top of seizures would be awful. I didn't even know there was a thing called an addictionologist. (Dialing one of my relatives right now...)
 
Hi skillefer,
I have sent her a link to the site to have a look in her own time. Hoping she gives it a chance.

Hi Jan,
She doesn't smoke anymore and hasn't for 4 months now, She doesn't seem to miss it that much either, considering the consequences.

She also doesn't drink anymore due to a few too many nights of it not mixing well with her anti-depressants.

This has been the hard thing for her as she has pretty much been forced to deal with reality and have no escapes that she had used so often before. Kind of a shock to the system I guess. I recently gave up smoking cigarettes so I know where she is coming from with the stress thing.

I'm guessing people have wondered so I will say, no, I don't smoke weed myself so there is no temptation around for her.

Cheers
 
THe closest thing I have ever been able to liken coping with E to is going through the Grief process, I can't speak for others but to me the correlation fits because basically, when E strikes, at least when you are older, you lose your sense of self...you grieve for your old self. So you go through:

1. Denial...."this is all a dream and I'll wake up and it will all be okay"

2. Anger..."why me"

3. Bargaining... " I'll do whatever it takes, just please, no more seizures/ make it stop"

4. Depression...this one is pretty self explanatory and I think a lot of us get stuck here for a while :(

5. Acceptance..." I have E. WHat can I do to make those around me cmfortable with it, how do I deal with the safety issues, etc"


I don't think it is just the person with E that goes through this either, I think our loved ones do as well to an extent.
 
Hi skillefer,
I have sent her a link to the site to have a look in her own time. Hoping she gives it a chance.

Hi Jan,
She doesn't smoke anymore and hasn't for 4 months now, She doesn't seem to miss it that much either, considering the consequences.

She also doesn't drink anymore due to a few too many nights of it not mixing well with her anti-depressants.

This has been the hard thing for her as she has pretty much been forced to deal with reality and have no escapes that she had used so often before. Kind of a shock to the system I guess. I recently gave up smoking cigarettes so I know where she is coming from with the stress thing.

I'm guessing people have wondered so I will say, no, I don't smoke weed myself so there is no temptation around for her.

Cheers

Do you go with her to her neurology appts? Did the doc know about her drinking and smoking weed? Cuz drugs/alcohol diminish the effects of most medications and cause a whole new set of problems.

I just want to make sure she has Epilepsy vs brain damage from long hx of using and drinking. Any other drugs or prescription meds abuse? Just stopping weed or alcohol doesn't mean the brain has recovered completely.

Keep us informed. Bless you for caring so much

Jan
 
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