[Research] Oh no -- here comes the sun

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Sunday, March 7, 2010

Lamotrigine 200 mg
Effexor XR 150 mg
Both taken 10:50

Partner looked wrong while asleep: ashen, completely slack. I can't really explain why, but he just didn't look like he normally does while asleep. He woke up to extreme dizziness, nausea and sensitivity to light. I thought he might get sick in bed. That faded within 15 minutes. Keeps forgetting he took his meds.

He said he felt cold, an effect of Effexor withdrawal, but his body felt hot to me for the first time in many months. That's a good sign: he has always run hot all his life, but it disappeared while he was on the gabapentin, and never came back after. Ate bacon and eggs and toast at 11:30.

Had a lot of space-outs during the day, despite sheet draped over the balcony door. Little spots of light still shone in and captured his attention. At about 3:00 sudden onset of exhaustion, confusion, irritability and body pain. Laid down to nap at 4:00 and experienced epigastric rising (burning from stomach rising up to the tongue. Ends with tongue burning and heavy salivation). Woke up at 6:10 with mild confusion, and wondering where I was (parent's house). Improved clarity and mood after 5 minutes.

Ate goose, mashed potatoes and red cabbage for dinner at 10 pm.

Bedtime was late (midnight) but no spasms at falling asleep, no 4 am wake-up.
 
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Poor guy, and hugs to you for being on watch-duty -- it must be so scary at times.
 
Aw, thanks Nak. The way his episodes change, and can be so intense, is definitely freaky sometimes, and the entire time he was on the gabapentin I cried almost daily. But my bounceback time is faster now, so in no time I'll be like "Bsh, please. You thought last night was bad? You shoulda seen it three months ago!" lol

He's the bravest person I know. I wonder at his tenacity -- he's gone through stuff like this, and worse, all his life, but he keeps coming back for more. A weeble if I ever saw one.
 
I just had a massive realization -- the fights with partner about going to visit my parents have nothing to do with visiting my parents.

This afternoon he and I were chatting about the veggie garden we're going to grow in his bro's backyard (he's kicking out basement suite tenant so we can move in. Yay. Way cheaper and all amenities, plus 20% off organic veggies), when he suddenly got that look. The I hate your parents they are a**holes look he would get when we would visit parents.

All of a sudden, he looked exhausted (droopy eyes), was confused and unable to answer simple questions and got angry with me for having the nerve to ask questions. Essentially got angry with me because I suggested red cabbage, and he won't grow red cabbage, but couldn't answer when I asked what he would like to plant. He said he doesn't want a veggie patch that's a failure, and found every excuse under the sun to blame me for his anger. This is out of character for partner (otherwise we'd have been through a long time ago).

This is exactly how visits to parents would play out with him. This is the afternoon mood I described on Friday and Saturday as well (only less extreme than Friday). The reason it always became a fight about my parents and their supposed short-coming had nothing to do with them, but everything to do with the time of day we go for visits. I'm going in a few minutes (the usual time, because it's usually for dinner), and he still has the mood.

I finally understand! Because at other times of the day he likes my mom a lot and wants to visit her (my dad is another story). When he does come in those moods, everything is percieved as an insult to him. Holy hannah. What a relief. Maybe with lower Effexor the moods will lessen? If not, I hold out hope that eventual proper diet and medication can get help.
 
let's hope so.
Sounds like you had an eventful weekend. Sorry I wasnt on to help you out with that. But I agree, it seems like a time of day thing. I know I get really grumpy just after work times, and its usually because I've had a few back to back absences or a complex partial. My myoclonics are super rare now *stupid JME diagnosis, good for nothing #$@%$^# neurologist and his #$%#^@ guesses. GAH* but if I get into a big myoclonic phase then I get grumpy.

after a complex partial *and tonic clonics* I get bitchy and a half when chad asks me questions. the usual "do you know where you are?" "Whats my name?" yada yada yada. I get mad because I know the answers are in my head and I either just cant say them, or when I do say them, i'm wrong. then he keeps asking other things, and i do yell at him "quit asking me questions! i dont feel good!"

then I go back to sleep. so I can fully understand that part. FULLY
 
I agree with earlier posts. The Lamictal dosage does seem low. I don't know how it interacts with other drugs. It would be an interesting thought to see if he can use one of those eye masks when he goes to bed or needs a nap. Maybe they can cut down a little more excessive light, especially in his sleep.

Can he try eliminating those hot dogs? That seems to be a consistent food across all the posts so far. The gluten in his diet may have to be cut down some as well like you previously mentioned. I totally avoid coffee, but do drink an occasional decaffeinated beverage if I have a headache.

Have you tried massaging him yourself? He may feel comfortable if you can relax his muscles. I practice progressive muscle relaxation and walk my dog at night when there is less light.
 
Don't worry about being busy this weekend Rae. This is what weekends have been like on and off for months... okay, maybe not as bad as this one, but close. It's just the way it is. That's interesting that you get grumpy after back-to-back absences or a complex partials. He may not experience tonic-clonics, but, man, does he ever get that mood you described lol

EDIT: I just read how you respond to Chad's questions to partner and he laughed -- that's exactly what happens to him too, and tries to be reasonable about them, but can't always be nice lol

Aliveandwell -- those are all fantastic suggestions, and the diet changes will come with time. Partner isn't ready for total healthful eating, and I don't always have the energy to cook, or convince him that healthy/restrictions are necessary. Right now we've just wrapped our heads around the idea that these are actually seizures, and our priorities lie with finding a doctor who will pursue this.
 
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Monday, March 8, 2010

Lamotrigine 200 mg
Effexor XR 150 mg
Both taken 9:30

Wake up was fine. It's a grey morning, and the red sheet is still over the balcony door, so the apartment was gloomy. One noticeable space-out, but nothing else. Mucho coffee as per usual. He is stubborn and refuses to give it up yet. Baby steps. We eliminated all milk products and electrolyte drinks, which is a coup in itself.

He had burning garbage smell again this morning lasting just over 5 minutes. Ate mom's home-made, pine-nut cookies and drank Almond Breeze for breakfast. About an hour and a half later had fluttering eyelids after which he got confusion, exhaustion, pain, which he still had when I called after 1 pm. Maybe I won't have to deal with moods when I get home tonight? Would be nice.


He had another confusion, exhaustion and pain all over spell at 4:30. When he laid down to rest, he began to have the clonic spasms again (shoulders, abdomen, legs in unison) and this time it made him gasp. Mood was okay though. Ate veggie samosas with chutny at 6:30.

When I went to the grocery store, he only requested some fruit. Haha! Maybe all this talk of diet is sinking in *fingers crossed* Still, crap food is better than a bender, which is what he really wants to do.

Falling asleep was okay sleep at 10:30. Woke up to him at 2:40 -- left leg twitch then he'd start panting and his left arm and abdomen would clench, then he'd make faces - angry, fearful angy and then it would stop. About a minute later it would start again. Happened four times, and during the face-making one time, he lifted his head and turned it to his left. He woke up suddenly, then had epigastric rising six times in a row with about half a minute between each episode. Poor guy.
 
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yes. that would suck.
try goats milk or soy milk and see if that helps. *although soy milk has estrogen *which is a pro-convulsant* but it may be less noticable in a male when testoterone is more predominate* although progestrone is a natural anti-convulsant

electrolytes are supposed to be good for you, but there may be something else in the drink that makes him ill. as your body has natural electrolytes, so replacing them is usally a good idea to keep things balanced. especially after a seizure or heavy/ strenuous activity.

definity should try to limit it to 2 cups of coffee in the morning.
 
In all honesty, I'm tempted to not record what he eats and drinks anymore, because that's fast becoming the primary focus of people's posts on here. I am keeping this diary for him and I to see trends, not to be repeatedly told that he's making poor dietary choices (we are VERY aware that he's making poor dietary choices). When I'm able to show him trends brought on by bad food choices, only then will I get him to change his diet. If I don't record those food choices, I can't show him what's what.

Rather than focusing on what he ought to change, I would rather hear how what you have changed in your diet that has helped improve your health -- I think seeing how food choices can raise seizure threshold would be more illuminating for partner. Reading about other people's personal experiences with these issues has always been a better teacher for him than being told what he should be doing (by me or anyone else). He's a stubborn man.
 
Yeah I was stubborn too.
But since switching to GF just before Xmas, I found that my complex partials hardly generalize at all. actually, since switching, I have been able to go 2-3.5 weeks without a seizure when before I would have 1-2 a week, and they were always clusters. Now, since x,as, all my tonic clonics have been singular except for one, where I only had a short, less violent one afterwards.
It also has lessened my time frames for TC too. I used to be around 4-6 minutes, and now im down to 2-4 minutes. more so around the 2 minute range. which is way nicer than before.

It really hasnt done much for my auras or complex partials *except stopping them from generalizing, which makes me believe that only part of my seizure problems are food related. the other part is either chemical, electrical due to the scar tissue on my brain. I know that partner has not had a TC *that is known I suppose* but it really is worth a shot.

But do keep with recording food choices, as it could show a small constant occurance. even if you dont post it.
 
I have a question Rae -- were you ever a coffee drinker? If so, what kind of improvements did you see when you stopped drinking coffee?
 
LOL!!!
was I a coffee drinker? I was a coffee addict! I drank usually about 8-10 cups a day. from 8am to 10pm. and I was talking with Chris515 the first time we met at a coffee shop and he let me know caffeine was really bad for lowering seizure thresholds, so I tried to stop cold turkey. But man was the withdrawl bad. So I switched to flavourful drinks, like Tea Mistos *aka london fogs* when I went out. usually picked African Red Bush *Roobis, if I spelt that right* with a shot of flavoured syrup. usually it was caramel or cinnamon. which is really good. then asked for steamed soy milk instead of regular milk or cream.

I found that switching to something still full of flavour was easier, and made sure that I started with caffinated tea, as caffiene in tea is a slower release than coffee, so it keeps that "high" for longer. and less jolt than coffee. then I switched to decafe. I still drink a cup of decaf coffee in the morning as it now more because I miss the flavor in the morning than anything else. Plus it was a routine I had, and I found that giving up my morning routine was harder than giving up the coffee.
 
Did you see any changes in your seizures, or any changes in how you were feeling as a whole after you stopped the caffeine?
 
yeah, most of my stomach aches went away. I dont know if that was from the no coffee or the no gluten. but eitehr way. i dont get the grubles anymore. emabarrsingly it sorta felt like diarhea cramps, without the diarhea.

but i did sleep alot better at night.

even if I didnt take the melatonin *its my love now!*
 
Lol thank you for taking my post about eating as it was intended. You're an awesome support and source for personal experiences. I really appreciate all of that in you. And thank you for the info Rae. It'll go a long way to helping partner see what changes can help.
 
AW!
No problem. Thats what I'm here for. Your a great help to me too, you understand from an "outsiders" point of view. I know that its hard to hear what your doing wrong all the time, but at least you acknowledge those things. But it is important to hear what your doing right too. and one big thing your doing right is keeping track of everything.

Have you seen Meetz's list of things to keep track of? it does seem like alot, but it has helped me alot. I dont have a copy hear at work but you can probably click on one of the newbie posts and find it there, or PM Meetz to see what she can offer up.

I pick up information pretty quick, I have a photographic memory. at least when it comes to trivial things. but sometimes I get things on the tip of my tongue that I just can't remember for the life of me, even thought I know that I know the answer/words/suggestion. *although it is might be a small seizure at the moment I need to think*
 
Yeah, I've seen Meetz's list. I want to record everything, but I need to work my way up to it lol. I'm pretty proud that I'm doing daily entries right now, but I know that won't be enough soon. I've only just gotten partner to gleefully pay attention to and report seizure activity to me. Seriously! For the last week I've had to pry the info out of him. Today he volunteered it in a chipper tone. We had talked last night about how the diary was helping me cope with things like his moods, so I think he's beginning to understand just how useful it is for both of us, and what kinds of connections we can make because of it. I think it's also giving him some hope that things can change.
 
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