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Mar. 3rd, 2014

Red Cap

Diet

I've been on a diet for the past 2 months now. I've lost about 16 pounds, which is good. I'm using My Fitness Pal to track calories and I'm trying to eat healthier. More vegetables, less cheese (so sad), fewer carbs, less soda (1/day), more water (like 16+ glasses a day), etc.

But I'm getting to a point where I'm cold all the time, I'm angry all day, my hands start shaking, and I feel like I'm starving. Even after I've eaten 2,000 calories in sensible meals. I don't like being aggressive, which is how I get when I'm hungry (I've always been like that.)

So I'm going off the diet for a couple of days to see if that helps. I don't want to go overboard. I'll continue to limit my soda, increase my water. I'll continue to try to eat healthy. And I'll continue to count my calories. But I'm not going to limit myself to just the 2,000 I'm supposed to have.

We'll see how I feel in a couple of days.

Dec. 4th, 2013

Red Cap

Sleep Update

So I’m on Xyrem now. Xyrem is sort of pre-metabolized GABA (a date rape drug). It’s only approved for narcolepsy, which I don’t have. So I had to wrestle with my doctor and the insurance company to get it.

It’s fast acting and doesn’t last long. You take it when you go to bed and wake up 4 hours later to take another dose. The wake up in the middle of the night part can be a pain in the ass.

My experience goes sort of like this:

  • I started at 2.25g, twice a night. The first 3 days, it was completely ineffectual. I felt like I was sleeping more deeply, but there was no benefit to my EDS.

  • Day 4, something strange happened – I woke up at 6am, when my first (of 3) alarms went off. I got out of bed feeling more rested than I have in a long time… Possibly ever. Within about 15-30 minutes I was able to focus on tasks and get things done. When I got to work, I immediately started working, as opposed to sitting blindly at my desk in a sleep-drunken stupor until after lunch. I crashed around 8pm.

  • Days 5 - 7 were the same way. I slept about 7 hours each night. I did take a Nuvigil in there one day to make sure I wouldn’t have any strange reactions to the 2 medications at once (I checked with the pharmacist first and knew I might need a Nuvigil when my vacation started, but that’s another story.)

  • Days 8 - 9, I stopped sleeping through the night. It seemed like normally, when the Xyrem wore off, I woke up. But now it was wearing off faster. So 2-2.5 hours after taking it I was up. I didn’t wake as rested as the past few days, but I was still better than normal. Still crashing around 8.
    Day 10 I increased my dose to 3.0g, twice per night. I immediately started sleeping through the night and waking refreshed again. That lasted about a week before I felt the diminished effects.

  • I increased my dose to 3.75g, twice per night and found I started getting depressed. Part of it may have been environmental (family drama), but I’m certain part of it was the Xyrem. I also didn’t get that refreshed feeling back. I cut back to 3.0g after 2 days

By this time I was home from vacation and it was Thanksgiving. I found myself sleeping longer in the morning and taking naps throughout the day. I spoke to the pharmacist and she suggested that sleeping longer might be “undoing” the work the Xyrem was doing because I was falling back into old sleep patterns after it wore off. She also suggested I increase the dosage more slowly, by 0.25g, to see if that helped.

So here I am. I’ve been on Xyrem for about 4.5 weeks. I’ve been on 3.25g, twice per night, for about 3 days. I’m trying to keep to a schedule better. While I still don’t feel that rested sensation, I’m getting up between 6 and 7, rather than 8 and 8:30. I’ve started walking the dog first thing in the morning to try to get my blood going (that’s something I’ve always wanted to do – exercise before work). I’m still mostly focused by the time I get into work and can concentrate on tasks. I crash between 8 and 10 most nights, which is better.

This might be what a normal person feels like. Hopefully it keeps up.
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Nov. 12th, 2013

Red Cap

Sleep Update

My normal sleep doctor was out on Maternity leave, so I saw another doctor at the sleep center. He prescribed me Xyrem, which is for narcoleptics. He was worried (as was my normal doctor) about insurance covering it, since I don’t have narcolepsy. But at this point, it’s my only unexplored option.


So my insurance sits on the authorization for 3 weeks, then requests more info from the sleep doctor. He sits on it for another 3 weeks, at which point the insurance company denies it, because they never heard back.


The SDS pharmacy, the centralized pharmacy that distributes Xyrem, calls me to let me know my insurance denied it. They put me in touch with a patient advocate service who helps me navigate the insurance company and doctor to find out that in the end, it was the doctor who dropped the ball.


SDS enrolls me in a coupon program, which reduced the medication costs to just $10 over my normal copay. They schedule the shipment and I work from home so I can sign for it. Only it never arrives because they cancelled the order without telling me.


I call them up to raise hell, which I do, and let them know they need to communicate with me. Apparently insurance is going to pay for the meds now (that shouldn’t have stopped the shipment, but whatever). Only they’re still waiting on something from the doctor.


SDS enrolls me in the coupon program again, I work from home again, and finally the meds show up. I guess insurance will pick up the cost of refills (which they only authorized 2, but that’s fine, since we don’t know if it will work).


I started the Xyrem last Friday night. The first night, I woke several times with hip and shoulder pain. Probably because I slept more deeply and didn’t move during the night. I didn’t feel any better in the morning and I dragged all day. I slept about 7.5 hours and had anxious dreams. I ended up taking a nap during the day.

The second night, I woke several times with hip and shoulder pain. I didn’t feel any better in the morning and I dragged all day. I slept 9.5 hours and had anxious dreams.

The third night, I woke a few times with hip pain and my arm asleep. The pain seemed to be lessening. But I still didn’t feel any better. I slept 8 hours and had relatively normal dreams. I ended up taking a nap when I got home from work.

The fourth night (last night) I only woke twice with shoulder pain and numbness, so it’s still improving. I actually woke feeling better. Not rested, but less tired, in a better mood, and with less sleep drunkenness. I slept 7.75 hours and had normal dreams. I took a Nuvigil to try to stay awake during the day (I ok’ed it with SDS last night) and to ensure that I wouldn’t have any problems if I took one while I’m at NASA* next week.

I don’t know if waking up ok this morning was a fluke or the medicine is starting to work. I hope it’s working. I am sleeping much more deeply. We’ll have to see, since I’m still at the lowest dose and it may take a while for it to change my sleep to where it’s supposed to be. But today, for the first time, I’m hopeful. Granted, I’ll probably build up a tolerance to it at some point (I was told on average it takes about a year), but hopefully it works for a while. Wish me luck!


*That’s a completely different story.
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Nov. 4th, 2013

Red Cap

Halloween 2013

We only hit 2 haunted events this year, but both were great.

Pennhurst Asylum – 4 out of 5

Still the same attractions, but there were some improvements. We got there at about 7 and I think we got home around midnight. That said, we went with some friends and hung out after we were done, so lines were definitely better this year. I’m not entirely sure why.
Also this year, my friends Tom and Deb were working the lines. Because of this, there was a lot more interaction while waiting to get into the attractions. They’re both very high energy and enjoy what they’re doing. You can see that by watching them.

  • Pennhurst Haunted Attraction – Still a great attraction. I didn’t notice too many changes here, but there’s so much going on that it’s hard to see everything. Their details are great and I wish I could linger in the rooms for longer.

  • The Dungeon of Lost Souls – The actors in here seemed better than in previous years. They were a lot of fun and interacted with us a lot. The effects are great, makeup is great, and their energy is great. I enjoyed this as much as the main attraction.

  • Tunnel of Terror – I think this attraction has seen the most improvement over the past few years. No longer is it just a long, blinding trek that attempts to induce falls. They have it stocked with actors now, their use of fog and strobe lights is limited to a single area, and they have a lot of props. While not quite as enjoyable as the main attraction or dungeon, this is pretty good.

  • Ghost Hunt – Nothing’s really changed here. It’s still just a walkthrough of one of the unrestored buildings. It’s neat to see graffiti and old furniture, but there are no actors and no real scares.


Valley of Terror – 5 out of 5
This was a new event for us and it was fantastic. They have 3 attractions and have been doing this for about 10 years now. We went on November 3, which was their last day. That may have influenced the actors’ energy (one last hurrah!)

  • Zombie Safari – I had high hopes for this, but it was a little lack luster. I understand why though. You get on a wagon armed with paintball guns (you get 120 balls). They drive you through some woods and then a mock up town, all populated with zombies (about 20 people). The zombies are all slow, many don’t move much, and don’t really approach the wagon. You’re supposed to shoot them in the head. My gun had a wicked slice and hand the time the balls didn’t break because they were frozen. It was a great idea, but I’d like to see the zombies swarm the wagon, even if they’re slow moving.

  • The Forsaken Forest – This was a walk through several areas. They didn’t have much in the way of details, but the actors were pretty good, the makeup was great, and the walk was one of the longest I’ve been on (10-15 minutes). It was well stocked, the actors had a lot of energy, and they generally weren’t afraid to touch you (in fact they even came right up and touched you with their chainsaws – really nice!). The actors also followed us for longer than I expected, so it was great.

  • Hayride to Hell – This hayride was great. While the makeup wasn’t always the best, they had some really amazing sets and a few really amazing animatronics. The best thing was that the actors often came on board the wagon to get everyone. The level of interaction here was truly phenomenal, and really lifted the overall rating from a 3.5 to a 5. This is how haunted hayrides should be done!

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Nov. 5th, 2012

You Are Here

Semi-Charmed Kind of Life

I went off the Nuvigil because the higher does wasn't helping and the lower dose didn't work after I'd been on the higher dose for 2 weeks. The doc prescribed me Adderall, which is 4 different amphetamines. I'm only taking half the dose she prescribed and it seems to be helping. I'm not wired, but I'm more awake. Not as awake as I'd like to be, but it's better. So far no real side effects. Lets hope this helps for a while.
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Red Cap

A Little Late

We hit 2 other haunted houses this year.

Haunted Hayride at Winding Brook - 2 out of 5

This might have been the first year for Winding Brook. It was fairly low budget, which I don't mind if you have good actors. Unfortunately their actors were hit or miss. They have two attractions, the hayride and the corn maze. It was a slow night when we went, but the place was well staffed. My brother worked the corn maze this year. I would like to see them spend their money a little more wisely and improve next year. They have some potential.

  • Hayride - They took us a good distance into the farm to start the hayride. Further than expected. The actors were primarily trying to startle you, which I'm not a fan of. They used rars and screams to get you to jump. I much prefer when they have some type of script or schtick that puts them in character. They primarily had face paint (which I don't mind) and stock masks (which I do), which lead to a low budget feel. That said, they had a fire breather, some minor pyrotechnics, and some ok sets. While not scary, I enjoyed the little boy laying on a bed who sat up and said "there's a monster under my bed!" and then someone popped up and dragged him out of bed. The spoiled crazy girl was probably the best actor there and had a schtick that she pulled off well. After the "haunted" portion, they took us all over the farm, almost on a tour, though it was dark and you couldn't see much (it wasn't narrated or anything). Some of the places they took us would have made excellent haunting attractions. The tour made up about half the time on the hayride.

  • Corn Maze - The corn maze was well stocked with actors, some of which were good and others not so good. It was a mish-mash of themes, from a drill sergeant to zombies to rednecks. They apparently found a sale on mannequin parts, because that was the major set dressing. They did little to spice them up, so I wasn't a fan. They did take you through a trailer with some good set dressing. The maze was fairly long, long enough that I felt like I got my money's worth. Chicken doors were misleading and we nearly walked out of some of them. The actors were kind enough to send us in the right direction though.

Fright Factory - 5 out of 5
This is my first 5 out of 5 star attraction. They had a good sized budget and used their money really well, had incredible actors, and even scared me a couple of time (not just startled). They say they have four attractions, but each one leads you to the next, so it's sort of a single attraction with a few breaks in it. They only send you in groups of 6 or less, and my wife and I were in our own party. Lines weren't too long, though the hurricane may have had something to do with that.

Even before you get into the haunt, they have a person in a big skeletal rig. Once you get your tickets, you have to pass by a large formless mass that follows you around and tries to engulf you. All of the attractions are in the basement of an old warehouse or factory. You follow mostly plywood halls to get from place to place. It's dark, but usually not pitch black, so you can find your way. They use strobes, but not to blind you. They made use of a lot of back doors, so actors got two shots at scaring you. It was effectively double staffed, but even if you ignored the back doors, it was well staffed. There are actors waiting at the backdoor as well.
  • Zombie Outbreak - This freaked me out a bit because the actors did a good job of shambling and hovering in the uncomfortable range. They had primarily just face paint, but the actors were really good and it was dark enough that it didn't matter. Some good statuary was used here and the actors did a good job of sneaking up on you. I think it was staffed solely by men.

  • Asylum - This had a "guide" in the beginning who told you about the patient there. They had an old door with a monitor on it that showed a hallway and cells. As he's talking, the hall lights up and a crazy girl makes her way towards the door in a typical stop motion way. She pounds on the door and seems to bloody her fists against it (good touch). Then she gets an axe and pounds on the door. The door actually got axe-shaped dents in it while the recording hits the door. I've never seen that before, but it was really impressive. Then the lights go out, the guide is killed, and they spray water on you in a very blood-like manner. A new door opens as a girl giggles down a hall. You then head through several "patient" rooms with female actors. In one, a girl with a head cage scrapes her nails on a steel door. With her superb acting and the aid of a strobe, she really looked like she was moving in stop motion.

  • Doll House - The actors were all women in this one as well. They rarely made any noise and all wore the same type of doll mask and frilly dresses. They used a lot of silhouette projectors to show gruesome scenes on the walls. It was very subtle, but creepy and really interesting. The rooms were primarily bedrooms and "typical" house rooms.

  • Crypt - There were some low ceilings here. Many of the halls had window's cut into them and it's important to look through these windows. They're not set dressing, they actually show a surprisingly detailed and creepy landscape. Cemeteries, dark rooms, and moonlit fields were present. It took me a while to realize I should be focusing on these more carefully. They did have some set dressings in the crypt, though they didn't have a whole lot of actors. They did have a few animatronics and made good use of statues and "fake outs" (i.e. that's a dude and he's gonna move any moment! But he doesn't) Another attraction that was mostly men.
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Oct. 22nd, 2012

sleep

To Sleep or not to Sleep

I had my 6th sleep study and 2nd MSLT a few weeks ago. I just go the results back.

The sleep study revealed no problems. Few abnormal arousals, no apnea and nearly no hypopneas. It did show some limb movement, but not an excessive amount. However, it's the first time I've shown any of those (and there were 45 this time). The only strangeness was I was in REM longer, and deep less than normal. But apparently not grossly so.

I fell asleep all 5 times during the MSLT again. That apparently puts be at moderate hypersomnia.

The doctor put me on a higher dose of Nuvigil, since the 150mg wasn't helping as much as it used to. But now I have nausea and a sore throat all day and sporadic dizziness and crankiness/depression. I also have trouble falling asleep. Not happy about this. The higher dose is substantially different than the lower dose, since I didn't have any real side effects except elevated mood and I talked a lot. I still talk a lot, but I don't feel as awake and I've gone the opposite route on the mood scale.

I'm going to cut back to half a dose and see if I can get the side effects to go away for a few days.
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zombie crossing

It's that Time Again

We hit Pennhurst Asylum again this year. How did it hold up?

Pennhurst Asylum - 4 out of 5

They have the same 4 attractions this year, but there were a few improvements. Lines moved faster, but the place was still crowded. Leaving home at 7PM, we didn't get home until 1AM.
  • Pennhusrt Haunted Attraction - This was still a great attraction. Most of it was the same, but there were a few changes that improved the overall experience. The toilet covered in bugs was a great effect. The actors seemed "on" despite the crowds.
  • The Dungeon of Lost Souls - The Dungeon also had some improvements, but I think the best was just that it was better stocked with actors. They have you walk through the boiler room and the ramp up the heat for effect. Make sure you dress in layers. Definitely worth a trip.
  • Tunnel of Terror - If any attraction had room for improvement it was this one. And they did a good job with it. Less fog and strobe, more actors, and fewer hazards. They had a host of areas with props and did a very good job with the whole thing. The majority of the people in our party thought this was actually better than the Pennhurst Haunted Attraction, so you can tell they really improved.
  • Ghost Hunt - No real changes here. But since we did this one at the end of the night (rather than the first thing last year) so it was more enjoyable. That and I probably knew what I was getting into.
LuLu's House of Horrors - 2 out of 5

We hadn't been here in a couple of years so it was nice to see what they'd changed. The House of Horror's is a bit different than most other places, as you buy your ticket, get on the hayride, it lets you off at the house, when you're done you get back on the hayride, and that lets you off at the corn maze (and you can't get out without going through it). It's not really separate attractions, but we'll treat them as if they were.
  • Hayride - They made some nice updates to the hayride. It's not exceptionally long, but it's broken into 2 parts, which is a nice perk. The actors seemed rather amateur, but they were trying and doing it for a good cause. In general, the costumes, makeup, etc. are middle of the road. Not professional, but they make good use out of what they have.
  • Haunted House - The house is small, but you go through half the first floor, then the second, then finish the first. There are some walking hazards that you have to watch for. However, they have some animatronics, some actors, and some good makeup in the house. Not bad for a relatively small budget. They didn't have a whole lot of improvements in here, but they kept things on par with the past.
  • Corn Maze - The corn maze is really just the cattle chute for the rodeo, though they tie corn stalks to it to try to mask it some. Last time we were here it was unmanned. This time they had about a half a dozen actors, though they didn't really do much but stagger around.
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Aug. 3rd, 2012

Red Cap

Long Time

It’s been 5 months since my last post. Honestly, I thought it was longer. How time flies.

This will be long and rambling. Feel free to ignore it.

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So I guess that’s about it. All the excitement has been in the last week. No wonder I haven’t posted in 5 months…

Mar. 4th, 2012

sleep

No sleep for the wicked

Sleep was going relatively ok unmedicated for a while. Then it started getting bad again. And of course, when it gets bad, I don't have the energy to try to do anything about it. So it kept getting worse.

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