[Research] Oh no -- here comes the sun

Rae1889 · #21 03-03-2010, 12:38 PM

Yeah, I found no difference when I was at that dose. lower dose got rid of my complex partials, and a higher dose has stopped my complex partials from generalizing. other than that, i hate this anti-epileptic drug. *mumble* *grumble*

occb · #22 03-03-2010, 01:44 PM

I was wondering that today too Nak. I think it's worth it for partner to bring it up to lazydoc (or other GP when he finally makes the change).

EDIT: It may be a bit of a battle to get it upped though, since 200 is the recommended dose for bipolar II, which is what he's being medicated for. The psych who recommended it did say it would help if he was having seizures too, so I think that guy was on to something. Too bad partner can't see him again.

occb · #23 03-04-2010, 09:42 AM

Thursday, March 4, 2010

Lamotrigine 200 mg
Effexor XR 225 mg
Both taken ??

He's been awake for just over half an hour and has already had 4 space-outs. Had to find his sunglasses because the sun is already bright, and he gets caught up in the curtain (next payday, new curtains!). Every time he took the sunglasses off, he had space-outs, one long and deep enough to leave him exhausted. With the sunglasses on he's able to deal with it.

Ate two bowls of cereal. He was hungry, but forgot about other food we have in the house.

No nap. He was okay in the evening, chatty and in a good mood.

For dinner he ate hot dogs (even though I cooked quinoa and veggies) darnk a glass of sodium-free, sugar-free electrolytes which may be what led to his horrible sleep.

Woke up to him at about 4:30 am and his shoulders, abdomen and legs were spasming in a clonic-like rhythm. I spoke to him to see if he was awake/conscious and he was. He said it had been going on all night. This would stop in under a minute, then start up again a minute later. At one point after, he stiffened completely and then the rhythmic jerking started again. It continued like this getting further and further apart until I got up at 7. He seems to be sleeping peacefully right now. We both thought he may get a complete tonic-clonic, but it didn't happen. I was conceredn about whether to take partner to urgent care clinic or not -- but since it's only occuring in his sleep, it's not like we have anything to show them when he's awake. They'd just send us home.

This is what lazydoc said when I tried to talk to him about partner's disordered sleep, "People do crazy things in their sleep all the time. I'm not worried about that." Yeah, well, eff you lazydoc.

Note: Because he's sensitive to sun, I'm going to try and remember to check UV index changes with times when he says the episodes worsen. Whoops -- the UV index I found was actually for Friday, not Thurdsday, so forget the comparison for today. I can't find the Thursday index.

Rae1889 · #24 03-04-2010, 10:03 AM

Hey love,
Today is thursday march 4th.

occb · #25 03-04-2010, 10:14 AM

Oops! Thanks! I cut and pasted the top lines without editing. Yeargh!

We watched "Where the Wild Things Are" last night and at the part where Max crosses the sea, partner starts telling me about his sailing days when he was 9-11. Apparently, he was knocked out by booms SEVERAL times at that age *rollseyes* We started talking about his head injuries, and he's been knocked out many, many times in his life -- falling off cliffs, sailing, garage door, trunck lid slammed on his head, a few fights, baseball to the head... and he never went to hospital for these. Ever.

This may explain the escalation of some of his experiences at certain ages.

Rae1889 · #26 03-04-2010, 10:22 AM

Wow,
Yes that would do it.
I've been knocked out a few times too. Funny how we both fell off a cliff. I was leaning to go look at things below, and it wasnt too far it looked like, so I *being oh so smart* decided to just jump. turns out that the shrubs I thought were shrubs, were trees. I jumped from the top of a tree. It was so movie like as I realized what I did. then I cam to a halt in on of the branches close tot he ground. did the whole "phew" the the branch broke and I landed on my head.

my firends went through 9 million emotions from the time I "jumped" to the time I hit the ground, and then being taken to the park patrol clinic. wonders

Sw, its cute that he was a sailor. I've always wanted to, and the closet i have ever got was a canoe, a kayak and a motor boat... oh and a rubber dingy

**Nakamova** · #27 03-04-2010, 10:30 AM

Boy that sounds familiar! I had my big head injury at age 5 (fell off some bleachers and hit my head on the metal struts on the way down). My noggin continued to pick fights -- with a softball, with a trunk lid, with a windsurfing boom, with a low-hanging ceiling -- and lose. Nothing that required a hospital visit, just bruising and headaches.

**Nakamova** · #28 03-04-2010, 10:36 AM

I used to do a lot of sailing on an ex-boyfriend's boat. Sleek and speedy, tons of fun in the summer sun. And the boat was great too.

I still have access to a Sunfish from time to time, but it's not the same...

occb · #29 03-04-2010, 11:45 AM

I'm sensing a theme here... lol

Partner will laugh when he finds out he's not the only one to have had so many heady experiences.

I wonder if experiencing simple partials, where your consciousness is gone for just a second, or where you just fall over (as happens to partner), are to blame for a number of the later accidents.

I think I remember that Rae's MRI showed scarring, have you had an MRI Nak? I'm wondering if that might be something to try with partner when we find a consenting doctor.

Rae1889 · #30 03-04-2010, 12:20 PM

yup, definitely try for an MRI. even if head injuries were not in the history, tumours and cysts can grow at any time.

**Nakamova** · #31 03-04-2010, 12:32 PM

I had an MRI, but it didn't pick up anything. The machine malfunctioned the first time, and I had to do it a second time

so it may not have been the most accurate. According to my neurologist it was an older machine, and it's likely that the current generation of MRI machines would pick something up.

occb · #32 03-04-2010, 12:41 PM

Huh. Well, it's definitely worth a try then. Maybe something will show to help convince the docs that it's a route that should be investigated.

occb · #33 03-05-2010, 09:43 AM

I'm going to call SIL today -- her family doctor is a family friend and she's probably willing to take on new patients within the family, so we'll see if she will take on partner. The thing is, she only works part-time, so her availability is very low, but, and this may be a good but, she had brain surgery years ago, and if I remember correctly, it was for something seizure-related. A potential ally in our quest for help?

Rae1889 · #34 03-05-2010, 09:52 AM

DO IT!
Ask as soon as you can. this is a great opening. and she will understand more than anyone. even if her surgery was not seizure related. she will have had a neurologist that she can refer you to, as she went to one herself. and since she is a doctor as well, they dont usually mess around with each other or their families.

occb · #35 03-05-2010, 11:41 AM

Spoke to brother and Dr. Familyfriend is out of town on holiday right now. He offered to call her on her cell, and I said that it's okay to wait until she's back from vacay to talk to her. It seems she had surgery for night-time seizures, so she may be very understanding.

I did make it clear to brother that I want her to be okay with taking on the workload of partner as a patient, because he has a number of medical needs that have to be addressed, and that if she feels she cannot take on someone who requires more attention, then maybe she can help us get in to another doc who will listen?

Anyway, we'll see in a few weeks' time, I guess.

Spoke to partner about the electrolyte mix -- he says it left his esophagus feeling slimy, the way milk does, so we think perhaps calcium is the night-time culprit? I know that calcium plays a role in neurons during sleep, so it's possiblen. Partner wants to try an experiemnt to test our theory, but I had to go to work before he could formulate or verbalise the idea. I am mucho curious about what he wants to do though. Honestly, at this point we can't do more harm than the docs do.

occb · #36 03-05-2010, 11:57 AM

Friday, March 5, 2010

Lamotrigine 200 mg
Effexor XR 225 mg
Both taken 9:15

Bad sleep last night, but woke up in an okay mood, but energy faded fast and half hour later was feeling crappy. Had to put sunglasses on to keep from staring, and spacing out at curtain (black on white pattern and sun shines through curtain). It seems almost like if something catches his attention (bold patterns, optical illusions) he just has to stare at it, like an 'oooo... pretty' response.

occb · #37 03-06-2010, 02:23 PM

Friday, March 5, 2010
Lamotrigine 200 mg
Effexor XR 225 mg
Both taken 9:15

Bad sleep last night, but woke up in an okay mood, but energy faded fast and half hour later was feeling crappy. Had to put sunglasses on to keep from staring, and spacing out at curtain (black on white pattern and sun shines through curtain). It seems almost like if something catches his attention (bold patterns, optical illusions) he just has to stare at it, like an 'oooo... pretty' response.

For some reason I can't go back and edit this entry, so I just copied it in order to finish it.

Bad day. He couldn't stop staring, even with the sunglasses on. Had bad confusion all day -- went to the store and forgot why, and forgot to buy what he wanted.

He doesn't remember what he did from 1:30 - 5 approximately. When I came home he was unable to turn around and speak to me, although he remembers me coming home at 5:20. He doesn't remember the conversation we had a few minutes after that -- he said some things that were VERY out of character, which spooked me. He was in the worst mood I've seen in a long time -- angry, irritated, depressed, and he said his body hurt all over, so I chose to leave him alone.

I made sure he ate some hot dogs (it was all he'd agree to eat), and the mood began to ease up, then suddenly lifted an hour after eating, but lasted 3 hours in total. He was his usually chatty self after that, like nothing had happened earlier in the day.

Fell asleep fine. Had shoulder spasms early in the morning, but nothing major like the previous nights.

occb · #38 03-06-2010, 02:47 PM

Saturday, March 6, 2010

Lamotrigine 200 mg
Effexor XR 150 mg
Both taken 11:15

Both slept through the alarm this morning. He decided since he's already at his worst again it won't hurt to try a lower Effexor dose. He's not normally one to do this, but the choices his doctor has made for him have left him feeling worse, rather than better. The best doc he ever had back east said, "you know your body better than any doctor does, so if I prescribe something to you that does not agree with you, stop taking it, instead of completing the prescription." So, we'll follow his advice, as opposed to lazydoc's. He's tired of feeling like this, so we're going to help ourselves.

Lowest dose available in one pill is 75 mg, so it looks like a leap, but it isn't.

Had some small staring spells before meds, but the sunglasses are helping. Had a moment where he smelled burning garbage just after meds lasting 2 minutes. Mostly fine today. Ate hummus and pita at 12:30 and it made him feel congested. About an hour later got a sudden onset of pain in his arm which lasted 1 minute, then a few minutes later, sudden onset of pain in his abdomen, which last about 1 minute. Was chatty for a few hours, then suddenly got nauseous, dizzy, exhausted, irritated and felt hurting all over at 5, but nowhere near as bad as the previous day. Lasted for about 4 hours. Happy and chatty again afterwards.

Falling asleep, just one small twitch in the abdomen and a slightly larger on in the shoulder. Late night though, didn't get to sleep until after 3am because the downstairs neighbours had a rawking fight. Partner predicted weeks ago they won't make it, and after last night, I concur.

**Nakamova** · #39 03-06-2010, 04:59 PM

Good luck with the taper off the Effexor, I hope he feels better right away. Make sure he's getting enough to eat -- that can contribute to being angry and irritated.

occb · #40 03-06-2010, 07:03 PM

So far so good on the taper, but it's only day 1. It should be at least a few days until we see some reaction to the reduced dose. Yeah, that mood was definitely not a hunger or low blood sugar related thing. The last time I saw him that bad was when he was on the gabapentin. I wonder if it's a post-ictal mood problem? I'm not sure. When it happens, it's usually in the afternoon after staring spells, or confusion, or he gets it directly after sleep.

Actually, food may be part of the problem. Because of this diary, partner's starting to notice how he feels after eating or drinking certain things: milk; electrolyte drinks and now hummus and pita have given him chest congestion, and after the hummus and pita today, he got a milder angry mood, nausea, exhaustion and body pain than happened yesterday.

Because of this, we're going to start eliminating the foods that give him that feeling, until we figure out a diet that works for him. So every now and then I'm going to write up naughty and nice lists regarding foods, so we have a record for ourselves.

Naughty
milk
coffee creamers
electrolyte drinks
hummus or pita (not sure which yet. Maybe even both)
nuts, especially cashews
pizza

Nice
rooibos tea
70% or higher chocolate

I foresee the GARD elimination diet in our future. It doesn't seem so overwhelming to do it now, because partner's on board with not eating things that make him feel like crap.