[Research] Oh no -- here comes the sun

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So I've been hearing from other women :roflmao:

It depends on the man, really.


as a sidenote, this was so the wrong thing to read before I've had my coffee. It took a minute beofre my brain adjusted and I had a serious WTF moment :/
 
:lol: Inaara -- yeah, it's true, it depends on the man. Usually partner's really good, but when his brain starts misfiring, he doesn't listen so well...
 
Friday, April 2, 2010

Lamotrigine 300 mg
Effexor XR 150 mg
Xanax --
taken 9 am

What wasn't added to Thursday's diary -- bad exhaustion all day. Legs were fine though, until late afternoon when they hurt badly, and he had a depressive mood. He doesn't remember the day too well... which is why I always call him at noon to find out what happened in the morning so I can record it before he forgets! But he doesn't want to tell me stuff when I'm at work. Silly monkey.

Today -- He woke up early. Says he didn't sleep well last night -- kept waking up all night but doesn't know why (he doesn't recall activity, but I've recorded a lot of activity where he only wakes up when it's done and isn't aware of what happened). Pain in his legs is fairly bad today. Had bad nausea when he woke up, but it went away ten minutes later.

9:20-9:40 Several incidences of bad smells.

Side note -- he is still having a lot of activity, but he's having less of it, and generally, his focus, his energy and his mood are better. He laughs more. He smiles and talks more.
 
When I started on Lamictal, my sleep was quite restless for the first few months. I would wake up a few times at night, and end up getting up early (and I am NOT a morning person). I would also have very crazy dreams. Those side effects went away, and now I sleep pretty soundly.
 
I hope it's the adjustment to the lamictal Nak.

I forgot to put in the diary that we had to switch to gen lamotrigine when we upped his prescription, because we couldn't afford brand name this month. Annoying! So chances are some of this instability is due to the change from brand to gen *sigh* next month we should be in a better position to get brand again, unless the vet bills are high again.

On the plus side, partner's brother has ended the tenancy with the guy in the basement suite of his house. The notice is three months, after which time we can move in. Yay! We'll be saving money, and maybe partner and his brother will get to know each other better.
 
Saturday, April 3, 2010

lamotrigine 300
effexor 150
taken 10:10 am

Leftovers from yesterday:

11:45 - 12:30 several episodes of abdominal pain on the right.

Two episodes of epigastric rising at 9pm. Saw him have a few staring spells around this time.

Woke up several times in the night experiencing epigastric rising.

Today he woke up early because of the epigastric rising. Has had two staring spells so far. He was a little cranky at first because the rising sensation makes him feel like he's going to vomit, but after it subsuded, his mood improved. Apparently it wasn't an epigastric episode which made him nauseous and cranky first thing this morning, he says when he woke up, everything in his visual field was shaking, like as if there was an earthquake going on, and it made him feel nauseous. It suddenly stopped about 30s afterwards. That's something I'm going to have to look into.

He's had a few staring spells on and off today. Around 3 he laid down for a nap because he became exhausted at 1pm. He woke up from his nap at 5 and has been angry and depressed since. I'm also not in a good mood, and our place is very small. We've been kind of avoiding each other in this small space all day. I've been reading or online, I went grocery shopping. He's been napping or staring... not doing much of anything. I want to yell at him to do something, anything, but I know he's not really in any shape to *sigh*

As of tomorrow, our coffee is 1/2 caffeinated and 1/2 decaf, so maybe some episodes will ease up. I also refused to pick up a candy bar for him, because I suspect that's part of the mood problems. I buy expensive, high coco content chocolate anyway, he doesn't need to eat candy. He needs to start eating regularly, and I hope he'll be able to with the groceries I've picked up. I doubt he will though. I'm just feeling frustrated today.
 
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Apologies if you've noted this already, but the epigastric stuff points towards Mesial Temporal Lobe epilepsy.
 
I've read that too. Hopefully a doc will figure out what all is going on, but I have my thoughts about why he seems to have a mix of frontal and mesial temporal seizures -- apparently, the prefrontal cotex of the frontal lobe has many deep links with the limbic system (mesial temporal lobe). I've also read that, because of this link, seizures in the prefrontal cortex may spread to the limbic system.
 
Sunday, April 4, 2010

lamotrigine 300
effexor 150
taken 10:15 am

Bad night of sleep. I caught the jerking this morning mostly in his shoulder, but also his abdomen and legs sometimes -- no pattern to that just chaotic jerks. He said it was worse in the night, the jerks were bigger -- his whole body would jerk rhytmically, strongest in his upper body and arms. Each group of jerks would last 10s. He said the spasms were like they were timed to a metronome. This apparently went on about every 5 minutes for several hours. I slept through all this. I also slept through a gaggle of screaming women at 4 am.

He woke up cranky and his whole body hurts. No kidding. If I could afford it, I would go in and change his gen to brand name and see if it made a difference.

He needs to see the doc and get on the reduction of the Effexor immediately. I've written a letter requesting a referral for the E clinic which he can take with him. The psych docs are telling lazydoc he needs to refer partner to the chronic pain clinic (about bloody time. We've asked him a lot, and he refused).

He had a few staring spells first thing and is wearing sunglasses to keep his focus, but his energy is okay and his mood has been good for the last hour, since he ate cinnamon raisin bagels with boisenberry jam. Mmm, boisenberry.

Spoke too soon. The 1pm exhaustion suddenly hit.

Evening he was tired and everything just hurt. Had tingling in his feet and they were cold.
6:30 episodes of bad smell, very intense for a few minutes, slowly subsiding over 40 minutes. Everything tastes awful during those 40 minutes.
Btween 7 and 9 had several episodes of sudden onset anger, which satyed for 20 minutes then suddenly stopped. No reason for the anger -- he was setting up to paint, and was excited to paint, then suddenly he didn't want to and was angry about it. He found it very weird, because he really wanted to paint.

Whenever I read about a new or different seizure, I ask partner if he's ever experienced it. Most often the answer is no, but sometimes... so I was reading Endless's description of a seizure that made her smarter, where the brain seems to be firing more quickly and smoothly, and he tells me he gets that before the floaty feeling he sometimes gets. He says everything suddenly becomes clear, like the fog lifts, and all of a sudden it's like he knows the answer to everything. I know that's a classic temporal lobe type of seizure. I need to do some reading to see what side that relates to. Huh.

Within 5 minutes of falling asleep he lifted his head and neck off the pillow pushing against the pillow with his right arm and extended his left arm and twisted it around like he was stretching. I asked him if he did it on purpose and he spoke softly and said I don't know, which means no. That's dystonic posturing, I think. the twisting of his arm. He laid back down and then giggled uncontrollably twice for a few seconds. He got up a little later, gathered some clothes and then came and sat on the edge of the bed. He spoke softly about going for a walk, because his hands were tingling (he gets restless when his hands tingle). He was very easy to convince to come back to bed, which makes me think he wasn't all mentally present at that point, but I'll have to ask him today.

He was also rubbing his feet together. I thought it might have been intentional because his feet were tingly, but he says it was both intentional and unintentional. He would rub his feet on purpose, then they would rub without his intention. At one point, he lifted his legs and smacked his fee together, which was totally unintentional.
 
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Monday, April 5, 2010

lamotrigine 300
effexor 150
taken 9:20 am

Woke up with pain all over and severe nausea. I got him to take several deep, regulated belly breaths and the nausea disappeared. The pain, unfortunately, is still there. When he has his seizures, he often breathes very shallowly, and he doesn't take deep breaths for a while after. I've been trying to teach him to beath deeply when he notices he's spaced out or has nausea, but I've had little success in doing it. I think it's time we started a little mediation in the morning and evenings to practice it.

Morning was good. Doesn't recall any space-outs. Of course the pain and sunny day yuckiness were there still. He did have an episode of actual "burnt toast" smell -- so realistic, he checked the toaster. But it was intense for 30s, then faded slowly over several minutes. He was very pleased that burnt toast smell is waaaaaaaaaaaayyyyyyyyyy more pleasant than the smell he usually gets.

Since 6:45 -- okay, this is going to sound weird, but runny nose seems to be a symptom for him (does anyone else get this? He NEVER has a runny nose, and lately he'll have it for a minute here, then a minute there). So here's what happened: goosebumps for 30s, followed immediately by runny nose for about 1 minute, followed immediately by sudden abdominal pain on his right side, and numbness and tingling and ice-cold in his right foot, add sudden onset nausea, and sudden onset headache on the right (which keeps jumping from right to left then right again. Odd!). Okay, it's 5 minutes later, he still has the abdominal pain, numb and cold foot, nausea and headache. Nausea went after 5 minutes. Followed by sudden cramp in his calf of his left leg which lasted 5s (excruciating!)

What the heck?! I don't even know if I should include this in the diary for the docs. Seriously? Runny nose? He's no hypochondriac, and he's only reporting what he's experiencing because I asked, but too much? :lol:

He was in a good mood from when I came home until about 9:45. Chatty and we laughed an dhad a good time, then -- boom suddenly very tired and staring a lot. He said he had the pain all day, even with the good mood, but it gets worse with the tired, depressed or angry spells.
 
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aw.
seems like a bit of withdrawl or something. maybe even some axiety that he knows the reduction is coming.
I have never heard of lamictal being used as a pain med, so I dont think thats helping with the owie pains. and from what i read over this weekend the pain seems more frequent and more severe?
 
I know exactly what he is feeling. I think the feet thing is anxiety from the seizures making him feel this way. I get this all the time. Not being able to keep still is the worst. I have this all the time before I go into a full blown seizure. **Elle, make sure he doesn't get up and wander off. I tend to do this and fall out somewhere. I thought I would warn you of this.** This seems to be getting worse for me too since my meds are loosing their effect over the past couple of months (need a dose increase or switch meds and a doctor who will take me seriously, but that is a different story). Anyway, The arm twisting is distonic posturing. I know this all too well. How do I know? I have experienced it in my neck, arms and legs before. It hurts and it SUCKS. I think that the dystonic postering is a Jacksonian March in my opinion.

Oh yeah, and the mind clearing thing - I know what you are speaking of there too. I love this experience. I wish it would stay like that in my brain. It feels as if I know everything and I am really brilliant or something and yes, the fog lifts and I know everything but too bad it doesn't last long and I am back to having a seizure an hour later.

tam bam
 
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Well! Thanks you two.

That explains the clear-headed thing. What amazed me was I didn't just think it made me smarter, it DID make me smarter. I had a little time reading about biochemistry and actually deeply understood what I was reading, as I was reading it.

After about 20 minutes my brain slowed down some, but it was on overdrive all night. But it changed from clear to running in scribbly little circles. What was in my brain during those 20 minutes kind of got stuck in there, and I was running around and around it in my mind. Weird. All gone today.
 
It's a pity that clear-headedness doesn't last, eh? Life would be so much easier...

The tingling may be anxiety, or it may be a seizure as well, and right now it's hard to tell. What normally happens for partner is that the tingling starts in his feet, travels through the body, ending in his hands, with the fingers tingling/burning -- which is apparently also a pretty classic description of a jacksonian march seizure.

Last night though, it didn't travel through his body, but he did get the giggles, which is typical for him after feeling the tingling travel. So, in short, I don't know what it is -- anxiety, seizure. Bleh.

Mighty Wikipedia has a little more information on Jacksonian Seizures
 
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So can anyone on this forum tell Occb and I what kind of AED helps with Jacksonian type seizures since the doctors don't seem to want to tell us? I am curious? Maybe we can tell the doctors ourselves. I hate to be pushy with them but it looks like this is the way (I) am going to have to be from now on. My meds do not help at all and never did for the Jacksonian type. No drug has ever helped with this type and it drives me up the wall. Thanks Occb for figuring out that I have Jacksonian type seizures because neuros have not been able to figure this out for 7 years. They have tried but failed to recognize it. At least now I have a name to tell them next time I go to the doctor. THANKS!!!

tam bam
 
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again, me not being a doctor, but Trileptal seems like it would be the best bet. It has a wide range of uses and both sides of the brain are affected.

I would also say, maybe in conjunct with small dosage ativan or lyrica would help for the pain and the smaller seizures.

I want to go into neurology so bad. too bad that requires money...
 
Lamictal was great at first, but we won't know how effective it is on its own until he's taken completely off of the Effexor. I know clonazepam (klonopin) helps partner ALOT, so we're going to try and get the doctor to switch his xanax for clonazepam, but we'll have to see if he builds a tolerance for clonazepam, the way he already has for the xanax.

The activity for Jacksonian seizures takes place in the Primary Motor Cortex which is located in the back of the frontal lobe (beside the parietal lobe) -- from what I've read, meds recommended for frontal lobe seizures are tegretol first, then trileptal, which is a newer cousin of tegretol.

What confuses me from the link tam bam provided, is that, apparently, jacksonian seizures show a recognizable pattern by EEG even inter-ictally -- which doesn't appear to be the case with either tam bam or partner, so WTF is going on?
 
Well, my thoughts is that nothing is ever so cut and dry with E. it doesnt ever fit into neatly packed boxes tied with pretty bows. so the studies that come out are very one sided.

I dont think that they actually get into the nitty-gritty with the subjects. what medications they were on at the time could have contributed to the inter-ictal EEG readings. or their diets. as RobinN had a link that said that gluten intolerance can show on an EEG as well as a few other food/allergens.

But there are so many variables when doing studies around individuals experiances and usually everyone is unique. you can find some people you identify with, and some you dont.

MY best guess would be that trileptal would be the best bet though. as tegretol is the older version. plus I find that trileptal isnt dispensed as much for E, so it might do more good than one that a neuro thinks is a "cure-all" drug.

If you think about it *so far as I have seen on this site at least* the most common drugs are Keppra, Lamictal, Tegretol and Dilantin.
EDIT: so it would seem to me that these are being used *and successfully used* by people with temporal lobe. so if frontal lobe is so different, then a different medicating approach should be taken. using not so common meds.
 
Hey, Rae,

Be a neurologist! Go to school! The grades needed to get into med school and a well-rounded academic resume and references are a bigger deal than the money needed. These days grants plus student loans are how most people pay for med school. You make so much money when you get out it could all paid off within 7 years or so. There are also programs where if you promise to practice in a rural area, your med school is free. Don't think the military would take you, but it's free if you promise to serve your country, too.

We need more neurologists that have Epilepsy. I think their personal understanding of the disorder would make a HUGE difference in successful treatment, and in making patients feel understood and well taken care of.

Gooooooooooooooooooooo RAE!!!! :)
 
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