Help me leave my past in the past
June 6, 2007 8:56 AM   Subscribe

StressFilter: I am an epileptic who experiences grand mal seizures. Ten days ago, I had 3 seizures within one day, and it seems like the cause was emotional stress.
I'm trying to work through something emotionally painful in my past, but when I start to move forward, I have a seizure. My question is this: how can I address something so painful without stressing myself out to the point of a seizure?

Here's my story: fifteen years ago, my step-father died. He had been molesting me for about two and a half years. My siblings were very young; neither remember him that well. I was around 11 when everything came to a point. I went to therapy for a while, and I thought I was over it.

I recently started having nightmares of him again. I've been calling my husband by my step-father's name and even hitting my husband, in my sleep. I made an appointment with a therapist and spoke with someone at their office explaining my history on a Friday. The next day is the day I had three seizures.

I've just recovered enough to start talking clearly again, and I was discussing the possible causes with my husband last night. After about ten minutes of talking about my deceased step-father, I started to feel like I was going to have a seizure, almost like I was losing control.

My doctor thinks that I should just deal with this current bout of seizures and then I can move on to deal with other issues in my life. But if it's the hurt feelings bringing the seizures on, then it seems like I'm stuck in a loop. I'm asking for your experiences (without details, if you like) in dealing with any of these situations: seizures, sexual abuse, and stress in general, because this is just one of many stressful factors in my life.

Here are some other notes: I've had epilepsy for eight years, my medicine (Dilantin & phenobarbital) is controlled, but the neuro wants to switch me anyway (probably to Depakote), and I have two children: one five-year-old autistic son and one nineteen-month-old daughter. I'd like to be there for them as long as I can, and I don't want them to ever see me like this again.
posted by mitzyjalapeno to Health & Fitness (19 answers total) 6 users marked this as a favorite
My heart goes out to you.

A close friend also has Grand Mal. I normally would not recommend this in any way, HOWEVER, he (on Dilantin for a very long time) actually swears by the "420" method of controlling his seizures. The drug action seems to be very effective for him - of course, YMMV.

Maybe time to explore a new doctor or a new therapist, or both?

In any event...please post updates, and most importantly -

posted by Carnage Asada at 9:09 AM on June 6, 2007

I would definitely caution you on the "420 method." You have enough going on without introducing a new substance and you have young children. I am by no means against medicinial uses of the aforementioned but my instincts tell me this is not a good idea for you right now. Sometimes cannabis can bring on emotional reactions, anxiety, and paranoia- especially in an inexperienced user.

This may be something to explore later when you are finished dealing with these resurfacing issues.

I would look into, along with traditional talk therapy, meditation techniques and perhaps body therapies like cranio-sacral treatments and massage.

Your MD's suggestion that you deal first w/ one, then the other problem- seems unrealistic. They are happening together and how can you compartmentalize? Perhaps you could research a more holistically oriented physician who specializes in epilepsy/ neurological disorders?

You might also do some research on your own- on correlations between stress and seizure onset- I have a feeling you will have some success if you do some digging- enlist your husband's assistance! Don't take this on by yourself.

Good luck to you- I think this is surmountable.
posted by mistsandrain at 9:57 AM on June 6, 2007

You might consider asking your therapist about hypnosis. Not to 'recover' memories (which is crap, and which obviously you also don't need), but to create a safe dissociative state in which you can talk about traumatic things with you therapist without reacting to them. I don't know if this technique is good for dealing with stress-induced seizures, but it is used sometimes more generally for therapy, and might provide some use here.
posted by carmen at 10:18 AM on June 6, 2007

If the cause is emotional stress, the solution is easy: control the stress.

Set limits on thinking about it. Before and after, sit in meditation for longer periods than the thinking about it period. Breathe.
posted by ewkpates at 10:19 AM on June 6, 2007

Do you really have to "work through" your memories about your stepfather? Maybe you should just avoid thinking and talking about him. There's a reason our brains repress traumatic memories -- it's not necessarily healthful to mull them over.
posted by footnote at 10:37 AM on June 6, 2007

avoidance is not a solution to major trama, it will just keep popping up in unexpected places later in life. I was just reading an article about how thinking or writing about the trama you have experience in a 3rd person narrative as opposed to the 1st person can be beneficial. It creates some emotional distance allowing the person to work through the emotions instead of being overwhelmed by them here is a link to the article.
The therapist you speak with should have some ideas for managing the emotional stress especially if you ask specifically about it. Good Luck
posted by estronaut at 10:56 AM on June 6, 2007

Some thoughts for a nonexpert:
Look for a therapist who is experienced working with post traumatic stress disorder. They should know how to get you to gradually deal with your memories so they no longer trigger a stress reaction. Some who does EMDR would have the right training (It's not clear whether the eye movement part of EMDR actually makes any difference but they understand the gradual exposure.)

I suggest that you use your husband to set up any appointments and maybe talk to the therapist about what is going on. That way you don't have to worry that the phone call will trigger more seizures.

When the thoughts come into your head, tell yourself that you are going to deal with them later - not now. Visually yourself taking the thoughts, putting them in a box and putting hte box on a shelf to be left there until you are ready (for example until you meet with your therapist)
posted by metahawk at 10:58 AM on June 6, 2007

If you happen to be a Christian there are specific types of prayer ministry that are awesome for dealing with the stress. Email me if you want more detail (email in profile.)

If you aren't but are still interested, email anyhow.
posted by konolia at 11:02 AM on June 6, 2007

Response by poster: footnote, I went a long time without thinking about him. Then I started dreaming about him again, always with me trying to get away from him and some of the time, to kill him. i don't know what brought it up in my subconscious, but I need to heal whatever is there. I can't continue to hit my husband in my sleep. It's not good for him or me.
What's making this especially difficult to deal with is that most of the time I don't remember the dreams. I'd remember one dream every week or so, but my husband (who's an insomniac) says I say my step-father's name every night. I don't want to live with the fact that this man hurt me so badly that I remember him without knowing it the next day.

I've also had some strong emotional outbursts to people with personalities that reminded me of him, and I'd like to gain more control over my responses.

Thank you for all of your ideas - they're wonderful!
posted by mitzyjalapeno at 11:21 AM on June 6, 2007

First off, I commend you for your willingness to face down these monsters. I am not epileptic, but I have gone through many rounds of therapy dealing with the after-effects of being molested. I very much relate to your sentiment that you thought you had this demon licked, only to find it manifesting in some new unexpected way.

In my last round of therapy I tried EMDR and had success with it. I have read other AskMe threads roundly debunking EMDR as extreme hokum, but in my case, there was something slightly goofy about following my therapists wagging finger, and it really helped keep a distance between me and the painful experiences. It made a huge difference for me because it kept the memories squarely in my memories, and I didn't feel as though I was re-experiencing the pain anew in each therapy session. Since that last round of therapy, I have felt truly free of the past...more than I ever have before, and I am glad that I gave it a shot. YMMV, of course.

If EMDR sounds too silly, then perhaps hypnosis could help to provide that cushion between you and your past. For me, the biggest help was feeling as though there was some sort of shield between the "me" on the therapy couch and the "past-me" that experienced and survived the abuse. I also had a therapist that I really trusted. That alone can make all the difference.

You will conquer this thing! Hang in there!
posted by omphale27 at 11:24 AM on June 6, 2007 [1 favorite]

Response by poster: I did try the EMDR thing with my previous therapist, almost ten years ago. I had the same response - a feeling of relief from a huge burden. I wasn't expecting it to have a shelf-life, though.
posted by mitzyjalapeno at 11:32 AM on June 6, 2007

It may not be a "shelf life," per se. You said you've had outbursts at people who reminded you of him. Was that recently? It may be that you got through the major emotional hurdles with your last therapist, and now more stuff is surfacing because of the external events in your life right now (like meeting others who remind you of him, for example, or maybe something going on with your own children?). These things often go through cycles, where you work through the most immediate problems when they come up only to find that, maybe years later, problems that didn't seem like a big deal ten years ago suddenly tie into something that's happening now and so start triggering more stress.
posted by occhiblu at 11:51 AM on June 6, 2007 [1 favorite]

I feel for you and I wish you well.

My own experience is having been diagnosed with myoclonus some 12 years ago after a lifetime of movement disorders and very rare seizures. I had one grand mal at age 15, later a few blackouts, and all throughout life that occasional twitch, chills-down-your-spine, deja-vu thing going on.

During a period of much higher job stress my then-partner noticed more twitching, especially in my sleep, and what he thought was the occasional absence seizure. This led to a round of neurological consultations. Eventually I was told I was "borderline epileptic" and official diagnosed with myoclonus. I was given a prescription for Depakote, which I am still taking.

Although my situation is not comparable to yours, I can say that finding a way to deal with the stress, combined with the medication, made a huge difference in my quality of life. In my case, once my boss saw me wearing the 24-Hour EEG "Borg" headgear for diagnostic purposes, he took my situation very seriously. I was told that if I was ready to leave at 4:30 or 5:00, leave -- don't worry about whether other people worked later. (He was also kind enough to say I got more done in 8 hours than other staff did in 10, but that's neither here nor there...)

About Depakote, talk with your doctor. If you take it, you will probably have to have a series of blood work done over the first several weeks to help set the right dosage for you. I go back once a year to check the valproate level.

There are side effects. I stopped drinking completely for the first few months that I took it, to make sure that I got used to it, then only very carefully started drinking again so that I could check the effects. I also found (over time) that it accelerated my family tendency to male baldness. I don't know how it affects women in that regard, although IIRC there was some information about not taking it if you are likely to become pregnant or be nursing.

One very beneficial side-effect of Depakote for me is that it is a mood-stabilizer. In fact, it is also prescribed for some people with bipolar disorder or other mood-related health issues. I have found, since being on Depakote, that I handle stress much better and that I don't get rattled as easily or over-react to things that used to bother me a great deal. I don't know if that aspect of Depakote would help in your situation, although perhaps it would in combination with therapy and whatever else you can do to come to terms with your past abuse.

I'm so sorry you're going through this now. It must be very frightening. I hope that your husband and other family and friends will be able to help you and give you strength to come through this.
posted by Robert Angelo at 12:12 PM on June 6, 2007 [1 favorite]

It's true that during times of emotional stress - the couple of weeks surrounding a move, for instance - people with epilepsy tend to have more seizures than their baseline.

It's pretty uncommon, though, that thinking about a particular topic should reliably bring on a seizure. I'm concerned in particular that the chain of events you describe may not have the set of causes that you think it does.

I think you could probably benefit from consultation at an academic epilepsy center, but that's about as far as I'm willing to go online. Best of luck to you.
posted by ikkyu2 at 12:16 PM on June 6, 2007 [2 favorites]

ikkuy is our resident neuro, so she can't give you any advice on line. I'm (one of) our resident twitchies (epileptic with grand mal seizures, sometimes controlled, sometimes not for 25 years) and not a doctor, so I can.

I'm not going to address the emotional issues because others have done so and I'm not at all qualified -- I will say that I am now well controlled on a cocktail of meds, but I still get twitchy when I'm sleep deprived (which I am now due to the arrival of my wonderful new son). Is it possible that the stress is causing something like sleep deprivation that could be making you more susceptible to seizures? Do you know what kind of epilepsy you have? If it's JME, that could be a related cause. Again, I'm not a doctor, so I may not know shit.

On meds, though, I offer you this from my own experience: If you are a woman, which you seem to be, I strongly recommend that you get a second opinion before going on Depakote. If at all possible, talk to a neurologist who specializes in seizure disorders in women. I happen to know of a fantastic one, as my sister sees her here in NYC and you can email me for details if you like. She is very insurance-friendly. As Robert Angelo said, Depakote a servicable drug with a few major pluses -- it doesn't interact much and it controls very well for those who like it. It's probably the number 3 seizure control drug in the US right now.

But it also has major minuses, especially for women. I took it for 20 years (literally) and only recently switched. It wasn't until I switched that I realized just how badly the drug had been messing with me. It had completely destroyed my energy, sapped my ability to think clearly (the "fogs" or the "stupids" they call it) and not incidentally caused me to put on 30 extra pounds which came off in two months when I switched meds. Now I'm taking Lamictal and Zonegran (don't ask) which have their own issues (the stupids again, but different now -- I'm sharp as a tack, but I can't remember . . . what are those things called? oh yeah, words) and I'm well controlled and feeling quite a lot better. The thing was, on Depakote, I had been taking it for so long I didn't even know what it was doing to me. I thought I was fine. Have you ever gotten out of the pool and you had water in your ear and didn't know it and everything is fine, but then the water suddenly drains out a little later and you're like "wow! this is so much better!" Like that.

Anyway, longwinded. Can you tell I think about my meds a lot? It's becauase I have a neurologist who's an academic and very focused on patient experience. It was he who told me that there have been some major advances in seizure control meds since Depakote was prescribed form me 20 years ago. Talk to your doctor about Lamictal, Keppra, Zonegran and Topomax. Several of these drugs have nifty side effects like making you lose weight and off-label uses like treating the downswings of bi-polar disorder (yay!). Several of them also have not-so nifty side effects like the aforementioned stupids, zits in places you never thought you could have zits, hair loss, hair gain, high SUDEP rates, fisherman's elbow, the hairy eyeball and all kinds of other mean, nasty, ugly horrible things, but then again so do the things you're taking now.

Seriously though, my sister is more seriously epileptic than I am and Dilantin allergic (as am I) and her neurologist, the specialist in women with seizure disorders, classified Depakote as something of a last resort for female patients. Other doctors may disagree for very good reasons and every patient is different and this is not medical advice and I'm not even a doctor, so what the hell do I know? Nothing! But please do see a neurologist who specializes in seizure disorders and knows about the latest research (particularly from Japan) in anticonvulsants and isn't just giving you whatever Abbott Labs says is the best drug.

Also, if you want to have some fun spend some time on crazymeds. It's a great site for people who have a sense of humor about their meds and it also contains a lot of great information. You have to take the forums with a HUGE grain of salt, but you can learn things there that you won't learn anywhere else, and the section on Anticonvulsants has links to the PIs (the sheets supplied by the makers for physicians describing all possible known side effects and approved uses) for many obscure drugs.

Sorry this is so long -- my eyes were opened recently and I'm little passionate about this. It's a brave new world for those of us with neurological disorders and everyone deserves to know.
posted by The Bellman at 2:34 PM on June 6, 2007 [4 favorites]

Best answer: It's pretty uncommon, though, that thinking about a particular topic should reliably bring on a seizure.

This struck me as surprising, too, that you were assuming the causal relationship was so definitive. I have epilepsy, and while emotional distress is mentioned as a factor by doctors, it has generally not been given all that much consideration. Now, this has been a frustrating issue for me, as I have even been prescribed the same medications by psychiatrists and neurologists, for different problems, and would like the links here to be given closer attention. But that doesn't necessarily mean it's a simple A leads to B situation either. On the other other hand, this self control therapy is discussed on a reputable medical research website... I don't know if you get auras or if this sounds intriguing / intuitively comprehensible to you or anything, but you could check out the book.

I guess I'm just saying, it's good to treat the emotional stress no matter what, but probably your neuro is going to be the standard attitude on this from the western medical perspective, which is, throw more meds at it until it stops (if it does), and then see if the SE are too invasive. I wish I knew another approach myself, but I am currently just throwing a higher dose of zonegran at mine...

For emotional stress: I think the most fundamental thing about reducing stress is actually assuring that you have enough room, somehow. Stress or tension is literally too much force on too little space or in too little time, so if you can let it spread out a bit, I think it can be dealt with more easily. You don't have to face everything all at once or deal with every issue. You already know what happened, and you have to get to a point where you can let yourself remember that and let it just be an ordinary memory - obviously a bad memory, but somehow not one that grips you or takes control of you - just a really fucking sucky memory. If it retains a special status of something too traumatic to think about then it still has a power over you. Your stepfather has to become something ordinary and crappy in your mind, like dog shit, instead of something mystical and evil, that can still cause fear and trauma 15 years later...

You have a husband who loves you & a family of your own - things are tough, but you have a lot that's working out pretty well, too. It's hard sometimes to see positives when there are such obvious difficulties in life, but especially with something like psychiatric or neurologic problems, the difficulties get worse when you get focused on them... I have the same trouble sometimes, and I have to remember that simple things like being thankful for my favorite breakfast may actually have an effect on my health.

(sorry this is kind of a mess of a comment - a bit stream of consciousness, here, and don't have time to edit right now but wanted to respond. good luck!)
posted by mdn at 3:16 PM on June 6, 2007

I have good friend who I was living with during the year he was on Depakote. He now remembers little of that year, and seemed very "foggy" the whole time. His baseline mental function improved markedly when he switched treatments (back to Dilantin IIRC) but he's yet to get his seizures completely under control. Of course this is just an anecdote, and I'm sure there are people for whom Depakote is a godsend, but I'd just like to chime in with the others saying that it's got major side effect potential.

Another thing to keep in mind is that while under its effects, the negative mental side effects might not be so apparent to you. Encourage loved ones to help keep an eye on your own mental state, and promise you'll try not to get offended if they tell you you're not seeming as sharp as usual (I was hesitant to say anything at the time for fear of hurting my friend, especially if this turned out to be the best alternative for him despite the sacrifice of some mental clarity. It didn't make him seem "stupid," more like tired/distracted.)

Epilepsy sucks, I wish you luck in getting it back under control.
posted by contraption at 4:45 PM on June 6, 2007 [1 favorite]

Response by poster: Thanks everyone for all of your experiences and advice. The first medicine my neurologist recommended was topamax, but I'm allergic to sulfa. The main reason I think the emotional stress was the main factor behind these seizures is that there was no other clear reason for me to have the seizures. My medicine levels are therapeutic and I can't figure out what else could have changed.

A couple things:
ikkyu2: do you mean a teaching hospital? I'm in New Orleans, and we do have a teaching hospital up and running post-Katrina, but it's not fabulous by a longshot.

mdn: thanks for the link and also thank you for describing stress and how to deal with it the way you did. My head is definitely still fuzzy, and having a clearer way to look at things really helped.

To contraption, The Bellman, Robert Angelo and all the others, thank you,
posted by mitzyjalapeno at 5:28 PM on June 6, 2007

mitzy: A teaching hospital is indeed what I meant. Bruce Fisch down at Tulane wrote the textbook I learned EEG from; he runs a Comprehensive Epilepsy Center. I think you could benefit from a visit.
posted by ikkyu2 at 6:56 PM on June 6, 2007

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