[Research] Oh no -- here comes the sun

[occb]

Tuesday, March 16, 2010

Lamotrigine 200 mg
Effexor XR 150 mg
Xanax --
taken 9 am

Woke up in a good mood, but tired and in pain. Spoke to him on my way to work, and he had taken his meds. Called at 1 pm and there's no answer -- so he's either sleeping, or listening to his earphones. His days are wasted in bed because of all this crap -- if it was just one or the other he had to deal with, I think he'd push through, but seizures and a back injury is just too much.

I need to call the E Advocate and see what she's been up to. It'll be three weeks tomorrow.

Just called at 2 -- he fell asleep after experiencing a number of episodes of what he calls "spiderwebs" -- little white lines in his vision. He actually has to reach out and see if they're really there or not. How unusual.

 

[Rae1889]

sounds like a good plan, maybe see if she has any other advice while you wait. any other ways you can get around disability rules so Partner can collect. even if its just for a short while. Because it might help with process of diagnosis as a way to collect.

 

[occb]

Huh -- I never thought of it that way... something to look into. I know he'll be able to collect when he knows his surgery date... whenever that is *sigh*

Still haven't heard from SIL's doc. Things are beginning to weight me down again. Poo on weighing me down!

 

[tam bam]

His days are wasted in bed because of all this crap

I told my epileptologist this very thing about my E. and I do not have a back injury. It is so debilitating even without a back injury. I understand what your partner is going through completely. The epileptologist I do not think really understood my point but I tried to make it clear to him that this is extremly difficult without the proper meds and doctor. Hell it is period because they do not understand at all because these doctors really are learning from us come to find out. They really do not have a darn clue! I am befuddled and so are they.

Anyway, I had many days when I wasn't on the proper dose of meds where I wanted to stay in bed too (Few years ago). I have been there. I know how he feels. Sleep is probably his only recourse or at least that is the way I felt at that point in time.

tam bam

 

[occb]

The problem is that sleep doesn't help much, since he seems to have seizures in his sleep *sigh* Stoopid poopid! Medical poopters! Neurpooplogists!

Any guesses on what my favourite word of the day is?

Tam -- do you ever get little white wispies in your vision that look like spiderwebs? Do you Rae?

 

[Rae1889]

yeah. but for 2 different reasons
1) because I really do have some white, spider webs substance on my eye. Not sure why my eye leaks this stuff, but I am being tested for glaucoma on June 15th. My mum has it *she's 39 now, and has had it since she was 34* and my grandma had it at 21. my baba had it about 27-28, so it runs in my family like crazy.

2)I have 2 things that might sound like what he experiances.

--one is like glittery strings that dont move, and sometimes they do. other times they are just floating glitter dots *tiny witches*

-- The second is waht looks like smoke. almost like a cob web. Thick and cloudy. only lasts for about a minute or less. both things

 

[occb]

I'll have to check with him about what exactly he experiences that he describes as spiderwebs.

I get the smoke effect sometimes... seizures sound like something everybody gets, but to a greater or lesser degree. Us "normies" probably get more brain shortouts than we think. Yeesh! I've had voices, slamming noises, shadows, smoke-like forms (where I've even reached out to see if it was there), out-of-body experiences, inability to speak, times where it sounded like the other person was NOT speaking English (I was shameless though, and would ask if they were actually speaking English... boy, that's embarassing). I always attributed those things to lack of sleep, or excess of drink (alcoholic or caffeinated). I called them brain trash... when the brain just needed to get rid of something it was hanging on to. "I have an expired door slamming sound," says brain,"let's just toss that..." BOOM!

No wonder some people can go half their lives without realizing they have E.

 

[occb]

He says they're white strings, not glittery, and they're everywhere when he has them.

Also, his squirming colours are always in the upper left of his vision... I'm detecting a pattern -- left, left, LEFT!

 

[tam bam]

I do not get the spider web aura that he is describing but I do get what I call my squiggly shooting star. It starts out in the corner of my left eye and it kind of goes up and down and squiggles. It can be very fast or very slow. It is very hard to describe on here. It is always white too no color. After I get one of these I always have a bad tonic clonic. It is a warning.

I understand that sleeping does not help your partner out. I found that not helpful either. It just helps time pass and helps with the nausea at times but yes, you are correct the seizures still come on. I had 2 in my sleep last night as well with the fencing posture and epigastric rising. It woke me around 2:00 a.m. Yawn.

tam bam

 

[occb]

Wednesday, March 17, 2010

Lamotrigine 200 mg
Effexor XR 150 mg
Xanax --
taken 9 am

I guess he had a few incidences last night/early this morning in his sleep, but didn't tell me any details when I asked. He actually woke up before I did (whaaaaa....?), and greeted me with a cup of freshly brewed coffee. Have I mentioned yet that I love him? I love him (yes back on the coffee. We are silly geese).

He was focused and cheery this morning. Apparently he took a xanax last night, which might be why he's good today. I don't know, but it was a nice morning.

Bright sunny day today -- sudden onset of exhaustion, body pain, irritability just after 11. Laid down and twitched a lot (both arms, both legs contracting rhythmically), got fed up and got up again. Felt terrible until the sun went down. Had several space-outs in the early afternoon over the course of about two hours. Energy is a little low tonight, a little slow talking and thinking -- watched a movie and had to stop it often to explain what's going on.

May have caught a seizure on audio tape -- he records snippets of music he's composed before he forgets it, so the recorder is on his lap and guitar in hand, he presses the button and starts playing. In this case, he starts recording and it's quiet, then he breathes deeply, it sounds exactly like the breathing he does at night before activity, a rustling and crashing sound (dropped something?) and then atonal plunking on the strings before he starts playing properly. The breath was odd (and familiar), and the atonal plunking very atypical for his recordings. I don't know for sure though.

 

[occb]

I do not get the spider web aura that he is describing but I do get what I call my squiggly shooting star. It starts out in the corner of my left eye and it kind of goes up and down and squiggles. It can be very fast or very slow. It is very hard to describe on here. It is always white too no color. After I get one of these I always have a bad tonic clonic. It is a warning.

I understand that sleeping does not help your partner out. I found that not helpful either. It just helps time pass and helps with the nausea at times but yes, you are correct the seizures still come on. I had 2 in my sleep last night as well with the fencing posture and epigastric rising. It woke me around 2:00 a.m. Yawn.

tam bam

What a brutal night tam bam. The late night wake-ups suck. Partner's had the fencing posture in his sleep on-and-off since childhood. When we first met, we used to laugh about the weird positions he would wake up in, and he demonstrated them for me, but it wasn't until a couple of months ago that I put two-and-two together that they were the fencing posture, but in kneeling position. Odd!

So, does this mean your meds aren't working very well anymore? Or are you needing an increased dose?

 

[Rae1889]

Has he tried to take the xanax at night instead of morning? or at both night and morning? if you split the dose?

Maybe its the Xanax not working its full potential when it is being taken at the same time as the other two. maybe wait until mid-day to take it?

Aw, what a cutie with the coffee! has he ever woken up earlier than you before?

 

[occb]

He rarely wakes up before I do, which is why it was so nice to wake up to coffee being served me in bed -- normally I do it for him because he's hard to wake up, and we have an itty-bitty apartment. The bed is ten paces from the kitchen, although, ten precarious paces, since there are guitars everywhere.

He's taken the xanax at different times of the day, but he only has 10 a month, so he tries to go sparingly, but then doesn't, because almost every day is sucky, and he just wants a few days break from the suckiness. It works better when he doubles the dose (1 mg instead of .5 mg) -- he's focused, energetic and chipper after, which may be why he woke up before me, and had the energy to make coffee.

He used to be on clonazepam and he said that worked way better than the xanax, and we would like to get them for him again, but the docs are being uncooperative. Speaking of doctors -- we still haven't heard back about SIL's doc.

 

[Rae1889]

Clonazepam is also an AED from what I remember. Just to give a boost to any other AED your taking, should you have a lot of activity. from what I remember its like lorazepan or ativan pils.

You should definitely ask the new neruo about this.

 

[occb]

When we get a new neuro. Right now we're just trying for a new GP! Tictoctictoc... again with the waiting to hear and waiting to see and waiting to wait!

 

[Rae1889]

Oh, what did E lady say when you called her?

 

[occb]

I haven't yet. I got too busy. Plus I decided to ask partner if he wanted to call, and he said he would. We'll see. I'd rather he do it anyway, because then he can focus more on his needs.

 

[Rae1889]

yesh good plan.
I think the more responsibility he takes on, the more proactive he'll be about everything without you having to tell him what he should be/needing to be doing. * I dont mean for that to sound like your bossy, but you do take on alot rght now*

 

[occb]

Yeah, I do a fair amount, but it's because he's just really been unable to. I don't mind reminding him to do things, but I always feel a little awkward being his mouthpiece, but, realistically, he's needed one. When his energy levels increase, like they have been the last two days, he's more functional and capable and can engage more in his own needs.

 

[occb]

Thursday, March 18, 2010

Lamotrigine 200 mg
Effexor XR 150 mg
Xanax --
taken 9 am

Sleep last night seemed okay -- I fell asleep early, but partner didn't say anything about a bad sleep. I'll have to ask when I speak to him later.

He woke up early, brewed coffee, came back to bed while it was brewing, then the second wake up he was nauseous and dizzy. I'm guessing the first wake up was okay, because otherwise he probably wouldn't have gotten up. Again, I have to ask.

Things seem to be calming down this week... maybe the lower Effexor dose is working? Chances are, now that I've written that, all hell's going to break loose *knocks on wood*

Just spoke to him -- he's energetic, focused and cheery. It's a cloudy day, so that's probably why. At about the time he took his meds, he had several episodes of bad smells over the course of 45 minutes- 1 hour, followed by that floaty, out-of-body feeling which was very intense for several minutes, then began to fade slowly over the course of an hour-and-a-half (the same feeling he had after the EEG). Since then nothing more.