A Hamster's Tale : My VEEG Journal

[AlohaBird]

So,
It's 8:15 here and I finally found someone who knew how to get me onto the wifi. Yay!

This was a long day. Started out up at 4am to get ready and get to the plane to Honolulu. Shuttle to Kaiser. Then I got my new MRI scan done and a DEXA bone density test.

Then I got transferred over to Queens Hospital. This place is nice! I have my own room with a window that looks out toward Diamond Head. The staff have all been very helpful and kind and the food is even pretty darn good for a hospital. I and a Caesar salad with salmon for lunch and bacon and eggs for dinner. They have passionfruit cheesecake! I have passion fruit falling off the trees at home. Must try making that. It's like a restaurant menu but you call up and order and they are happy to make substitutions or explain exactly what is in something.

I have my head all plugged in to wires and it looks a bit "Bride of Frankenstein". I just have to keep reminding myself not to scratch at the leads. Since the doc thinks mine is probably frontal lobe, most of the leads are around my forehead and one on each cheekbone plus some others around the whole scalp and five leads to my torso.

They do insist on having a "seat belt" around me at all times one on the bed and one on the big comfy chair. And I have to call for assistance to unplug and get to the bathroom. I'm trying to heed Matthew's advice about letting them do their thing and not fighting it even though I know I would be fine getting to the bathroom on my own at least for now. I guess they never know when someone will start sliding from well controlled into not so well controlled so they just have to make it a blanket policy from the minute you hook up.



Oh, and when I was at Kaiser a couple of weeks ago for my neurology appointment, I had my annual mammogram done "while I was at it" and they got me the results of that today. Everything came back all clear. That makes eight years post treatment.

:woot:

 

[AlohaBird]

New pro tip I just figured out. Make sure that what it says on the label of your pill bottles and what you actually take are the same thing before giving the pill bottles over for the info to be inputted into the computer. Both the dosage and the *timing of the dosage*.

My VpA label says two pills at night and two in the morning although that is incorrect. I take all four at bedtime. This was a typo that the Molokai pharmacy made a year ago which never bothered me until now.

The nurse was giving me my bedtime pills and was only giving me half what I normally take. I noticed and said wait a minute. This is not what the doc and I planned. We planned to step back on the phenobarbitol first, then the VpA in a couple of days.

I explained to her about the bottle labeling and she understood that I probably was right that this was not what the doc intended but she couldn't override the orders that were officially in the computer. The doc had probably handed the bottle off to somebody else to do the data entry.

Here's where I decided I really like my new doc and this hospital. She got him on the phone at home at 9:30pm and got the mistake straightened out and got me the right dosage.

Stepping back the meds in a controlled calculated way to perhaps provoke a seizure for the camera is one thing. Inviting status epileptics over for dinner is another.

But I was really pleased that it all got sorted out with no unpleasantness involved.

 

[Matthew74]

Aloha Bird, I was going to suggest ramen and Doritos, but I don't think you'll be into that. However, you might like this: Apparently the "seasoning" packet in ramen is highly flammable. The guy in the kitchen here found a video online of some guy setting the powder on fire. It lit up like the 4th of July.

 

[AlohaBird]

Aloha Bird, I was going to suggest ramen and Doritos, but I don't think you'll be into that. However, you might like this: Apparently the "seasoning" packet in ramen is highly flammable. The guy in the kitchen here found a video online of some guy setting the powder on fire. It lit up like the 4th of July.

I wonder if it's the MSG burning.onder:

I talked to the doc this morning and he asked if I would consider trying some "dietary provocation". So, what the heck. If I stay here a whole week and don't have any seizures, I haven't learned very much.

So, lunch today is going to be pizza and I'm having the linguine for dinner. Plus some coffee with the caffeine and sugar and cookies. I'm also trying to keep enough salads and fruit going in me so as not to get digestive issues. It's been six years since I've had pizza or pasta.

They have a lot of asian noodle based options on the menu too. Maybe I'll try some of that tomorrow.



Made it through the might without any problems and actually managed to get a fair amount of sleep considering all the wires and itchy goop. And then there is the person who wakes you out of a sound sleep to get your vitals at 4:30 am. You couldn't wait another couple of hours? Really?

But I remembered what you said and didn't get cranky. She is only doing her job and it is for my benefit. It just doesn't feel like it at 4:30.

And the doc wants to cut the Valproic Acid back by half tonight. I'm already at 50% off on the phenobarbitol. I've been at these 50% levels on both meds before when "on the outside" and being super careful about my diet. This will be an interesting experiment.

And they are going to have me stay up until 3am tonight. I'm kind of a night owl naturally anyhow so that isn't going to be that hard I don't think.



BTW, if a neurologist is recommending caffeine, sugar, stress, and junk food in order to deliberately provoke seizures, can there really be too many people out there who don't believe that these things are important?

 

[resaebiunne]

BTW, if a neurologist is recommending caffeine, sugar, stress, and junk food in order to deliberately provoke seizures, can there really be too many people out there who don't believe that these things are important?

I'm going to stretch here to say yes. Most "normal people" (i.e., people without epilepsy) can go through much worse and still not have a seizure. So there is clearly something different about the brain of someone with E that is causing the seizure activity to occur. As I've probably said elsewhere, if you want to live your life by a strict code of ethics and eat only certain things to control your seizures, more power to you. But my point all along has been that one should not have to do anything special in their diet and daily activity to not have to worry about accidentally provoking a seizure. That is what medication is for and why doctors prescribe it. That said, for a normal, healthy adult, pizza and linguine are not junk food when you eat them in reasonable quantities.

 

[AlohaBird]

Yes, but we are not normal

I agree that most "normal" people can "get away with" a lot more things that are unhealthy than people with seizure disorders can. At least while they are young. It all comes back to bite you eventually, IMO. Maybe it's diabetes, maybe it's a heart attack, maybe it's cancer.
Of course one plate of pasta=/=disease and death but I am talking about eating and lifestyle *habits* here, long term patterns.

We totally agree that it is an individual choice to take meds and live with the side effects but be able to eat/drink/smoke like a "normal" person or to try to reduce dependence on meds through lifestyle choices.

 

[AlohaBird]

I just googled my doctor and I found out that he went to med school and did his residency at John's Hopkins, the place that pioneered the ketogenic diet protocol and still continues with research on adults on the MAD protocol.

OK, I'm now impressed. No wonder he is up front about med side effects and is open to alternative forms of treatment.

I also found out that Queens Hospital ranks #1 in all of Hawaii. I think I'm in good hands.


So far I've had three cups of heavily sweetened coffee today and I feel a bit buzzed.

 

[Nakamova]

Here's hoping that buzz will get your brain cells hopping.

For me, one guess is that stretching, and raising my arms over my head has been a contributing seizure trigger (maybe related to a blood pressure or oxygenation issue). That, and low blood sugar. So if all the dietary triggers don't work, you could try skipping a few meals, and doing a lot of arms-up exercise as last resort (assuming the activity doesn't mess with the EEG sensors).

 

[AlohaBird]

Other than a sore back from sitting so much I actually feel remarkably good.
That would be an interesting stressor after all this sugar to drop all food and watch my metabolism crash. I'll talk to the doc about that.

Activity is pretty limited because the leads come off if I do too much. They have this little pedal thingy that you use while sitting in the chair sort of like biking. Gets the blood flowing a bit.

I had pancakes for breakfast and the nurse went and got me a stack of reese's pb cups from the gift shop/deli. I'm on my third cup of coffee so far. Buzzzzzzzzzzzzz

They did sleep deprivation (sleep from 3-7am only) last night and cut my VpA back to 50%. Tonight it is being cut out entirely.

For those four hours though, I slept fine.

 

[gbpackerfan]

Mmmmm, Reese's and pancakes! I'm totally jealous

 

[AlohaBird]

Mmmmm, Reese's and pancakes! I'm totally jealous

Yeah, it's a little bit of compensation for the sticky stuff all over my head and the IV portal in the back of my hand that hurts every time I move.

This afternoon they tried photosensitivity stressors but that didn't work. They basically shine a really bright light at your face but you have your eyes closed. It's so bright you see it through your eyelids. They do all kinds of variations on the wavelength and pulse rates of the flashes that make all kinds of triply kaleidoscope images on your eyes. It was actually kind of fun for me.

Then they tried having me hyperventilate, breathing as deeply and as fast as possible. I felt a teensy bit light headed but nothing else.

The nurse who got me the Reese's came in and asked, "How many of those peanut butter cups have you achieved?" Hehehehe.

The staff here have all been really great, very compassionate and they don't give you the impression that you are imposing on their valuable time if you ask for something (unlike some other hospital experiences I've had).

 

[AlohaBird]

Day 4 in the Hamster cage and still no seizure activity.

Last night I had zero VpA and 50% dose of the phenobarbitol. And I slept great.

Perhaps a long term EEG is like drug rehab for AED junkies.


They are going to try sleep deprivation again tonight and cut the phenobarbitol to 25% so I'll be the one up posting until 3am.


With all the junk food, caffeine, sugar, and lack of sleep, they are basically recreating what started my seizures off in the first place. College. The only thing missing is the mental stress factor and I think this is significant.

On Molokai there are bumper stickers and t shirts with the motto "Too Blessed To Be Stressed", and that is how I am feeling about my life. I feel safe here and very well cared for. I have a doctor I trust and admire. I have wonderful friends and neighbors taking care of my home and my dog for me. And I live in the best place I have ever seen.

So, I am a happy hamster.

I'm going at this whole experience with curiosity. While I know this test may not provide anything definitive one way or the other, more information is always a good thing, IMO. I think where people can get into trouble in a situation like this is when they are not really ready for it or not really sure they want to do it. Then it could start feeling like all this (the discomforts and inconveniences) is something that is being done *to you* as opposed to something you are doing *as a team* with the medical staff.

Regardless of if a person has E.S. or P.N.E.S., there is a psychological factor involved in seizure disorders that I think gets neglected too often in our medical systems that favor specialists rather than doctors who treat the whole person.

 

[resaebiunne]

Specialists are doctors (who treat the whole person). What's your bias?

 

[AlohaBird]

Specialists are doctors (who treat the whole person). What's your bias?

How about asking me to clarify what I meant instead of asking me why my "bias" is?

What I meant, and may not have been clear about, is that cardiologists look at hearts, podiatrists at feet, neurologists at the physical workings of your central nervous system, and psychiatrists at the mental and emotional turmoils of your mind. And all the other medical specializations.

Too often there is not enough collaboration or even communication between the various specialists. I think the old adage that "if all you have is a hammer, everything looks like a nail to you" may be true of this situation also. Each specialist is trying to treat something related to their area of expertise, missing the forrest for the one tree that they know a lot about.

As an example, perhaps a skin irritation is a manifestation of a gluten intolerance but if the gastro-interologist and the dermatologist never communicate, this might get overlooked.

There was a thread a little while back by a guy who was on a whole laundry list of meds prescribed by a laundry list of doctors and was having horrendous interactions and side effects and I don't think this is the only case of this kind.

Each doc had told him to "check with" his other docs while handing him more pills. In a medical system where it can take months to even get an appointment, this is easier said than done. Anything resembling interdepartmental consultation can fall through the cracks.


I am not saying all doctors are like this. I have a primary care doc who I think is awesome and now a neurologist who knows his stuff in his specialty but also treats, and also listens to, the whole person. I have also had many experiences with docs who were not so caring. The "diagnose and adios" type.

 

[Blonde Angel]

Well
Aloha..
Day 4 are you feeling yuk wuth the sleep deprivation ?
Sounds like a lot of preparation from leaving your home to doing these testings.

How often is this stuff done ?
Hopefully not too frequently....

 

[AlohaBird]

Hi, BA!
You know, I'm actually feeling remarkably good all things considered. Thank you for asking.

They are doing sleep deprivation every other night officially but in reality all the nights get interrupted by someone coming in to "take your vitals" or fix one of the leads that slipped off. I got four hours on the last sleep deprived night but I've only been getting about 5 or 6 on the other nights. Making up for it with caffeine. Bzzzzzzzzzzz.......

I'm not having any horrible reactions to the gluten other than some puffy ankles and a bad case of gas. It's a good thing I don't have a roommate.

Perhaps some of why I'm feeling good is a sigh of relief from my body with the meds being reduced. I feel a sense of mental clarity that is not just the coffee.

 

[AlohaBird]

Some useful tips I could pass on to the next "hamster".

1)Bring a "Bed Bag", a bag big enough with a lot of compartments for all the little stuff like your glasses, computer charger cable, reading material, and such. These are all the little things that can easily get lost in the sheets. Also, since you have to ask for help anytime you want to move from your bed or the chair, it's convenient to have all those things in one bag so they all stay in reach and move with you from bed to chair and back.

2)Bring chapstick. Air conditioning dries out your lips.

3)Bring earplugs. I got issued a pair, the soft comfy foam kind, when I had my MRI done the day I checked in and asked if I could keep them. They have been so helpful. The AC is also really loud. I'm used to rural quiet. Maybe I'm hyper-sensitive on this.

4)If you want to wear your own clothes instead of hospital issue, bring things that you can "work" with one hand because, when you head to the restroom, you are always going to be juggling the pack that has all the wires going into it and the cable.
For the ladies, I'm finding skirts, worn "commando", are so much simpler than pants. I suppose the guys could get their Scottish kilts or Polynesian sarongs on.
Also for the ladies, bras would just get in the way since you have a bunch of wires attached to your chest too.

5)Leave all the "vanity stuff" like jewelry, watches, and makeup at home. It just gets in the way and you have to resign yourself to the fact that you are going to look like a circus freak for several days.

6)Bring a variety of anti-boredom devices because any one of them is going to get old. I've got books, mags, puzzles, laptop, iPod and switching off between them helps pass the time.

 

[Nakamova]

With all the junk food, caffeine, sugar, and lack of sleep, they are basically recreating what started my seizures off in the first place. College. The only thing missing is the mental stress factor and I think this is significant.

Maybe you should start watching the presidential debates -- over and over again, if you've already seen them. No matter what your political orientation, those things are stressful.

 

[masterjen]

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

 

[AlohaBird]

Maybe you should start watching the presidential debates -- over and over again, if you've already seen them. No matter what your political orientation, those things are stressful.

Hah! I really am finding them to be comic relief. It's one giant circus and they are all taking themselves SO deadly seriously.

Now I was reading a NatGeo article about the rampant poaching of elephants in Africa which has become a way to finance terrorist organizations. That gets my BP up. Slaughtering those beautiful creatures to sell the ivory to buy bullets to slaughter more people. Urg.