A Hamster's Tale : My VEEG Journal

[AlohaBird]

Hey Aloha
When are you going to post a couple of pictures of you in your "Sunday best" with your head all wired up??

Not sure if this will work. Nope. It didn't.

I'm not sure how to insert an image if it doesn't have a URL........Ah, it's in the "go advanced" section.

 

[resaebiunne]

That's about what I looked like when I had my abulatory EEG

 

[AlohaBird]

That's about what I looked like when I had my abulatory EEG

I would so love to be ambulatory right now. It's the sitting here belted in that gets old.

Well, it's day 5 in the hamster cage and still no seizures. Last night was a 3-7 am only sleep deprivation night. Just as I was waking up I did have a couple little shudder feelings like the precursor to a seizure but I woke up and it stopped. Then doze back off, shudder, wake up, rinse, repeat about 4 times.

Not very restful. Tonight is a "normal" sleep night.

 

[AlohaBird]

Well, it got decided today that I am going home to Molokai Sunday so I'm getting the full week in the cage.

The doc wants me back on my full meds by the time they send me on my way but I'm not sure I like that idea. He is all good with working on a plan to cut back gradually but I don't see the point in putting the levels back up if you are going to be taking them down again.

I think it is an administrative CYA thing that if I had a seizure on the plane ride home they could somehow be held responsible if I was still on a lower dose. Silly.

 

[AlohaBird]

I miss my doggy!

 

[Nakamova]

Don't take this the wrong way, but I hope you have a seizure before Sunday so all the hassle (and being away from your pup) will have been worth it.

 

[resaebiunne]

Don't take this the wrong way, but I hope you have a seizure before Sunday so all the hassle (and being away from your pup) will have been worth it.

Disagree. She could still have epileptiform brain activity without actually having a seizure. It's worth it whether she has a seizure or not.

 

[Nakamova]

But of course! I was using "seizure" as shorthand for any sort of epileptiform brainwaves that would show up on the EEG. So far it's sounds like there hasn't been anything of note, though her neuro may yet weigh in.

 

[AlohaBird]

Well, I think even if there is nada, I still will have learned something.

I am pretty sure from interrogating the techs who watch me at night that I do have some apnea going on. That is good info to pass on to the neurofeedback person I'm going to be seeing back on Molokai.

Also going a whole week with cut meds, sleep disruption and all sorts of dietary "cheats" means that my brain is not as fragile as I might have thought.

 

[gbpackerfan]

Alohabird,
I really hope that something was recorded that will benefit you and aid in your treatment. I also hope that you've enjoyed eating some junk food and feeling a little 'clearer' with less meds in your system for a few days.

 

[AlohaBird]

Yes the junk food was an interesting experiment but today I went back to gluten free. I had forgotten how yucky having gas all the time can be. Urg. And I cut out the sugar today and stepped the caffeine back by switching to green tea.
Reese's were fun as a novelty but they really don't taste that good to me anymore. The memory tasted better than the reality.

I had eggs with yoghurt and fruit for breakfast and a chicken salad for lunch and pot roast with veggies for dinner. That to me is what tastes right and good regardless of if I ever have another seizure in my life or not. This is also good to know.

 

[AlohaBird]

Don't take this the wrong way, but I hope you have a seizure before Sunday so all the hassle (and being away from your pup) will have been worth it.

Thanks, Nak! Finally did last night. Feeling rather pooped out and achey this morning but I don't want to go back to sleep and have another one.

It takes a few minutes for someone to get in to help you if you need to get to the bathroom or something but it is amazing how fast they show up if you have "an event". A whole team of them complete with oxygen masks and intubation tubes just in case. (I know this because I found these things, still in the wrappers, on my side table this morning).

It's all on tape so we'll see what the doc has to say when he makes his rounds today.

I'm feeling like, "OK I've performed for the cameras. I want to go home. Now. Right now."

Tonight (Saturday)I get the full dose of meds to try to stabilize things and then I have plane reservations for tomorrow early evening. That gives us all of Sunday morning to get the goop out of my hair and get all my discharge papers processed and get to the airport.

Writing this is keeping me from acting on the irrational impulses that wander across a post-ictal brain like unplugging myself and walking out the front door and going to find a hotel for the night.

 

[Nakamova]

Hope you feel better soon, and have an easy trip home on Sunday.

 

[Zoe]

Well, it got decided today that I am going home to Molokai Sunday so I'm getting the full week in the cage.

The doc wants me back on my full meds by the time they send me on my way but I'm not sure I like that idea. He is all good with working on a plan to cut back gradually but I don't see the point in putting the levels back up if you are going to be taking them down again.

I think it is an administrative CYA thing that if I had a seizure on the plane ride home they could somehow be held responsible if I was still on a lower dose. Silly.

You have the option of telling him you respect his opinion but will stay on your current dose for the reasons you feel most deeply. Do what feels right to you.

 

[AlohaBird]

You have the option of telling him you respect his opinion but will stay on your current dose for the reasons you feel most deeply. Do what feels right to you.

I would have fought him on it yesterday but after the seizure I had last night, I am willing to go back on the full dose for a couple of days just to get sleep. I also think it's a good idea to clear the junk food/sugar/caffeine out of my system before I try reducing the meds again.


The doc was just in and it looks like the seizure I had last night was very clearly of the epileptiform sort so he is convinced I don't have P.N.E.S. Probably correct but it is possible to have both.

So, what has this really accomplished? Good question. What would have been interesting if we had enough time would be two separate tests, one with the Reese's and pancakes binge but no med change and another with only the med change. This test was a bunch of confounding variables tossed in at once not the least of which was the lack of sleep.

It sort of recreated the "perfect storm" that started my seizures off in college but it doesn't really answer the question of do I really still need the meds now or am I just having seizures because I'm a junkie having withdrawals?

The doc and I had a talk about my two meds and which side effect belong to which. He said that the bone density issue is much more common with phenobarbitol but that the weight gain issue is strongly linked to the valproate. Those were the two I was most concerned with.

For me, weight gain seems to have a downward spiral effect of more lbs, less exercise and more sitting around, leading to more lbs. I am more likely to do the weight bearing exercises I need to keep my bones strong if I'm not feeling fat and sluggish.

So we've decided to step back off the VpA first. He is recommending a schedule of 1 pill cut (out of four) once a month, so that is pretty cautious.

 

[AlohaBird]

Day 6 in the Hamster Cage. I had another seizure last night and it was a doozy grand map, wet the bed and everything. I don't remember anything.

I woke up in hospital gown.

But I'm still getting out of here today. I just got the sticky mess washed out of my hair and that feels like being reborn. Got dressed in some clean clothes

I've had breakfast and I'm just waiting to get my paperwork processed and then I may go wander around Honolulu for a little while My plane isn't until 4:30.

I just need to get out of here and back to my beautiful Molokai and see my doggy. I think I will sleep just fine tonight with him by my side.

It is going to take a lot of healing work just to get back to back to baseline after what has happened here.

Was it worth it? I honestly don't know. I will think about that more when my brain is functional.

 

[Matthew74]

I'm glad you had two, but sorry about the T/C. At least they have a recording of one. I liked your pictures. It was the electrodes on the forehead that drove me nuts. And yes, getting all that stuff cleaned off is like being re-born.

It seemed really strange to me how when I went in, on full meds, they thought I was a disaster waiting to happen, but then after three seizures and being off Tegretol for over a week, they sent me out the door, like, "Oh, you'll be fine!" They wouldn't let me move from my bed to the chair the second day I was there, but after I was messed up, on the day they released me they let me take a shower in a huge room with a tile floor and no one anywhere to hear me if I fell! (I felt fine, but still...)

 

[AlohaBird]

They got both of them recorded so the doc will have two examples to compare.

Yep, from the minute you first get that seat belt buckled, you don't go anywhere without someone hovering. It is actually rather helpful when you are dealing with all those cords and wires. Someone who didn't have a seizure disorder could be at risk of falling I guess.

 

[Matthew74]

I refused the belt. I didn't put it on, and then pushed it off the bed. When they asked, explained that I don't go anywhere with a seizure. I also said I was worried about my back, as I was only a month out of surgery. I would have gone nuts, and been very uncomfortable with it on.

 

[Nakamova]

Sorry to hear about the second seizure AB, I hope you don't ache too much and heal quickly in all ways.