I think that Doc’s classic cluster cycle has returned. Twice daily bad cluster attacks.

I’m convinced that Depakote he’s taking isn’t doing jack shit. It may even be making it worse. It’s definitely making the headaches different, and with these things, sometimes the devil you know is better than the devil you don’t.

Friday (his birthday) was simply awful in terms of pain. Saturday was better; he had a short attack in the afternoon but only hovered around a 1 or 1.5 for the rest of the day. This was good because Kathryn threw him a surprise party Saturday night at her house (I know, how sweet!!), so I’m glad he was able to go and participate and not be in too much pain. I had a great deal of fun. I haven’t laughed that hard in a long time. The dinner was awesome too, courtesy of Brett’s fantastic culinary skills: homemade burgers, homemade fries and onion rings, roasted pepper salad, and ice cream with blueberry-pomegranete sauce. Humor occasionally regressed to the 5th grade level, which I think is totally necessary for adults sometimes!!

Yesterday he woke up with annoying level 1 or 1.5 pain, and tried sleeping it off, despite this never having worked before. He proved, once and for all, that sleeping does not fix the pain, and it usually in fact makes it worse. He finally got up around 3 p.m. Later in the evening we went to Trinity Hall to play trivia again like last Sunday. I really like having a regularly scheduled activity with friends. I think that next week Doc and I and Kathryn and hopefully Brittney and Chris, and perhaps some other people (?) will form our own team. We did kind of kick ass in the “computers” category, getting 10 out of 10 answers correct.

His post from yesterday…

Nice Birthday so far…

The pain is out of control today…

I started waking up around 5 am for short periods as the waves of pain reached a level I couldn’t sleep through (1-2) I would then pass out and go back to the nightmares I was having. During one of these short periods of being awake I made note that the pain seemed to be switching sides although I don’t know if I was cognitive enough to judge if it was a “wrong side cluster” or migraine-like in nature.

When I got up I had a throbbing pain in the cluster area that was well into the 1-2 level. I tried to relax and ride it out but around 9:15 it started to ramp up and became a full on attack that had rapid waves of 6-7 and a baseline of about a 5. This is a bit unusual, most of my clusters don’t seem to “throb” as bad as this one did.

So here is the real sucky part… when it “broke” it never fully went away, it only dropped to around a 2 with waves approaching 3 for like the last 2 hours.

I am hoping for some relief soon…

4:45pm
The level 1-2 cluster pain has been pretty much constant since the last time I posted. Now on top of that I feel like I have a pretty intense “migraine” layered with it, it I feel it mostly on the cluster side but its more spread out and often throbs on the other side as well. Light sensitivity, feeling queasy, wanting to lie down and rest…all the things associated with migraines… along with the pin point cluster pain that makes you want to move and such.

its very tiring.

2:05am
The pain continued the rest of the evening. eventually the cluster “layer” faded mostly leaving the migraine “layer” (still on the wrong side). The migraine became a bit worse and I also started getting sharp stabbing pains in the back of my head that would make me wince and flinch. I still feel pretty crappy. But I guess I am going to try yo go to bed anyway.

This has been a simply horrible day for the most part. Thank god for my wife, she gave me presents, got me a tasty diner, rubbed my head and generally made me have a little joy amidst the pain.

I’ve been feeling rather awful the past few days, which made being on a plane really fun. It feels like Stomach Flu Lite. It’s really weird, too, because for the past 24 hours or so I have actually had an appetite (unlike the previous 24 hours) but every time I eat, I feel terrible afterwards. I haven’t had a lot of sleep for the past 2 days either, because I haven’t felt well, so I am both sick AND tired.

And last night Doc had a really bad cluster headache in the middle of the night (actually more like 6 a.m.). He said it was about a level 6, which hasn’t happened in a while. Also, strangely but not so strangely, he feels like those are almost preferable to the less intense ones, because at least with the intense ones, they END and afterwards he feels better.

Doc’s been feeling somewhat decent the past few days… relatively speaking, of course. He’s woken up without much of a headache, and that is a nice change. It usually hits later in the day but I don’t think it’s to the degree that it has been recently.

He says that the Depakote is doing really weird things to him. Before, the headaches would come in long waves, kind of like a sine wave that went really high in intensity for a while, then would dip somewhat lower for a while. Now the headaches come in shorter bursts that don’t get quite as high or as low. Both amplitude-modulated and frequency-modulated. Also, it’s like the cluster and the migraine and the Depakote are in a 3-way knock-down drag-out fight inside his skull, and one of them usually will have dominance for a short period before one of the other ones takes over for a while.

He has to gradually build up to taking 4 pills a day. Tonight he starts on week #3 (3 pills). Should be interesting to see what happens when he’s on a full dose.

Saturday we had a good day. Spent a lot of quality time together, I went to Molly’s wedding shower, we went out to the movies to see “Stardust,” which was quite surprisingly good and then later watched “The Constant Gardener” from Netflix, and we ate takeout for dinner.

At Molly’s shower, I saw a girl that I remembered from high school but haven’t seen since 1990. She and I had a class together and we sat together every day and goofed off the entire year. She was a year younger than me but she was one of the “cool kids,” the ones who occasionally cut class, probably smoked and drank, and generally had a much more developed social life than I did. But she hung out with me in class, talked to me, seemed to like or at least accept me. I definitely remembered her for that, and occasionally wondered what happened to her. I didn’t know that Molly was friends with her younger sister. She now has three kids, including a 2 week old baby girl and a 3 year old boy who knows all the words to Johnny Cash’s entire repertoire, and is as funny as ever. She said that she remembers me, although I’m not sure that’s actually true. She may have said it just to be nice. It doesn’t matter, though, I had a good time talking to her his weekend.

Today I began lunchtime yoga classes. I haven’t taken yoga in a year and a half, because I was lazy, training for a marathon, and really liked going out to eat every day instead. But I’m changing my ways now. I hope to go to yoga at least 2 out of 3 times per week, endeavor to cut back on my seriously out of control diet-Coke habit (by not drinking any before lunch time, for starters), and to continue my healthy diet changes. I’ve already stopped eating all deli meat (turkey, ham, roast beef, etc) and have cut way down on my meat consumption in general. I’m trying to eat more fruit (breakfast smoothies help a lot with that). More changes probably to come, but I think these are good goals to start with.

Anway, after yoga I felt fantastic all afternoon, as I usually do when I get those endorphins going in my bloodstream. I am certain that tomorrow I will barely be able to move! But I should be used to it after a week or so, I think.

After Doc’s visit to the emergency room three weeks ago, his migraine has gradually been getting less intense, one little baby step at a time. Actually it’s been more like 3 steps forward, one step back. Monday night he still had his buddy Mr. Migraine hanging out with him, and then their asshole next door neighbor Mr. Cluster came by for a drop-in visit, and surely overstayed his welcome, partying all night with Mr. Migraine and refusing to go home.

Tuesday afternoon, Doc went to see a neurologist, Dr. Maureen Watts of the Dallas Headache Association. She works in the same clinic as Dr. Stuart Black, who is supposed to be one of the world’s leading specialists in headaches. He couldn’t get in to see Dr. Black, of course, as he seems to be booked up through the summer of 2008.

From what Doc told me about his visit, Dr. Watts seemed to actually take an interest in helping him feel better long-term, rather than acting dismissive and throwing drugs at him. He’s had so many bad experiences with doctors who don’t seem interested in getting to the bottom of what is causing his many and varied problems, and who don’t seem to want to deal with him because he’s not an “easy” patient.

Doc wrote up several pages of history, detailing his health issues, that he gave to Dr. Watts. She read it while he sat there, and then asked him specific questions about things in his report. (I think that doctors love it when you come to them with a well-thought-out detailed list like that.)

She said that from what he described, he definitely has both cluster headaches and migraine headaches (which is rare, but it can happen), and although she’s not a sleep specialist, probably some form of narcolepsy as well.

And this was really the most important thing, I think, to me at least: She believed him. She understands what he is going through. She doesn’t think he’s crazy or making it up. She is on his side, a partner in helping him get well again.

He now has some anti-seizure medication (I believe it’s called Depakote) to try. Theoretically it can break the headache cycle, although will be more effective on clusters than the migraines. If it works, he’ll be on it daily for the rest of his life. And that kind of sucks, but if that’s the trade off for not getting headaches, so be it.

Next steps include another visit with Dr. Becker, the sleep doctor, some bloodwork, possibly an MRI, and some additional follow up visits to check progress.

I generally hate to feel optimistic about this kind of thing, because invariably that eventually leads to disappointment… but I can’t help it. I have hope that this doctor is going to be the one that’s finally going to help pull him out of his pain.

Everyone has been so nice to me for the past few days (not that you aren’t usually :) I really appreciate it. I realize that this is going to sound completely cheeseball, but it means so much to me that you guys have been so concerned about Doc (and me) and have been so quick to help us out in so many ways. I know that’s what friends do: we get each other through the tough times, providing an ear, a shoulder and a kleenex when we can’t figure out how to cope with the shit that life has thrown at us. And sometimes, when we haven’t seen each other in way too long, we pick up like it was only yesterday. I just hope that I can return the favor someday.

I’ve felt rather wiped out, mentally and physically… I guess it was a cumulative effect, culminating on Wednesday with the emergency room visit and all. I’m definitely feeling better now than I was last week. Stopping my Project 365 was a surprisingly huge relief, and once I beat it into my own thick head that it was OK to just go out to eat if I don’t feel like cooking, I suddenly felt like cooking again. Go figure.

My boss let me take the day off on Thursday, Kathryn came over that evening to hang out, and Brett showed up with a cubic meter of Italian food. I saw Debbie and Rachel, neither of whom I’ve seen in ages, on Saturday at Ginger’s wedding shower, then on Saturday night Brittney, Yvonne and Nate came over for margaritas and dinner. I had a great time playing with Zoe, and she smiled and laughed a lot (Yvonne said it was real smiling, not just gas :)

Enough about me. Doc has been up and down since I last wrote. The hydrocodone prescription from the E.R. has run out, but I think those pills were causing him not to be able to sleep (even moreso than usual). And also, did you know that those pills cost thirteen cents each? Crazy. I was expecting multiple dozens of dollars for the 5-pill prescription, as seems to be our fate with the medications that we need, and it was all of 65 cents. Embarrassingly enough, I did not have exact change and had to break a $20. The pharmacist looked like she wanted to roll her eyes at me, and I don’t blame her. Who doesn’t have 65 cents at the bottom of their purse?! (Me, apparently).

Anyway, Saturday was a pretty good day: Doc felt better than he had in a long time. Today was not so good. His head hurt pretty bad and he’s been falling asleep randomly all day. About 9 p.m. he said that he felt awake for the first time today.

I’m hoping that he’ll at least start having more good days than bad ones, if he can’t be pain free.

I just wanted to take a minute to thank all of our wonderful friends — especially Kathryn, Arushi, Britt, Bob, Joel, everyone who has left comments here, listened to us bitch, let me cry on the phone, drove me places. Knowing you care is a huge comfort.

I don’t take y’all for granted, even if I’m not always that good at expressing myself.

I love you guys.

Been thinking a lot about what to let go, to cut down on my stress. I need to be as healthy as I can to support Doc while he’s having a rough go of it, and to make it through all the extra work I have committed to.

So I’ve decided to put one thing on hiatus, and stopping worrying so much about a second thing.

As of 2 days ago, Project 365 is on officially on summer vacation. Hopefully only for a few weeks, but eliminating the stress of “oh fuck, it’s almost time to go to bed and I still haven’t taken a photo” is going to make a difference. It’s not like I’m doing it for anyone except myself, anyway, and I need to learn how not to feel guilty about failing to achieve personal goals, so this is a good start.

And the thing I’m going to quit worrying about is cooking vs. eating out. The stupid spaghetti incident from last night made me realize that not wanting to cook, and getting takeout instead, is not the end of the world. I routinely worry about what to pack for my breakfast and lunch for work, and about cooking when I get home at night, WAY more than most people probably think I do. Planning all that is so prevalent in my mind that it’s probably adding more to my stress levels than I ever realized. So if I’m tired, I’m going to go out and just not worry about it.

For a while.

Until my August and September freelance hell months are over.

Until Doc starts feeling better.

Too exhausted to write much, but the CAT scan came back clear. No tumors.

Hydrocodone definitely dulls his pain but he’s totally stoned at the same time, so it’s not much of a solution.

Good news is, going to the ER got him some sort of emergency referral to Dr. Black, the headache neurologist who’s “booked up” until 2008. Going to call him tomorrow and see when he can see Doc.

Had good experiences at the hospital. Doc felt like this time (his 4th time in the ER for headaches, the other 3 were before I met him) people were taking him seriously and not just saying “you have a headache, take some tylenol” and sending him home. Doctors seemed concerned, wanted CAT scan done. Several different people asked him who his neurologist was and seemed surprised that he didn’t have one, so rather than a “do you want to see a neurologist about your problem?” attitude, it was more like “um, sir, someone in your condition NEEDS to be seeing a neurologist.” That was definitely a positive experience for him. The nurse who gave Doc the pain shot and who checked us out at the end was so nice and so concerned about him, she seemed very sincere and caring. I didn’t get her name. When we initially got to the hospital and had to park a few blocks from the ER in the only parking we could find, a hospital worker pulled alongside us in his truck and offered us a ride up to the ER, which we took. VERY good hospital experiences this time.

Of course, we haven’t yet gotten the bill.

At E.R. Getting CAT scan. More later.

Tonight it got to me a little.

I was doing okay today, mostly, until just now. I went to work, talked to Doc a couple times about the headache stuff (and he’s having a really bad day, which is emotionally stressful for us both), we went to see our new financial guy who is going to make it so we don’t have to expend frustrated brain power on our investment strategies, and then I promised Doc I’d cook spaghetti tonight when we got home.

After fighting traffic across town at 5, we talked on the phone to Dr. Aronoff’s nurse, who told us that the options were to take a different painkiller or, if it was worrying Doc, to go to the ER. Can someone please tell me exactly how WE are supposed to know if we should be worried? Isn’t that what the doctor is supposed to use his years of medical training to determine?! I think an eleven day long headache is pretty fucking worrisome, but for a doctor to tell us to go to the ER to get a brain scan if WE think it’s something to worry about… I just don’t understand that reasoning.

Anyway, that was extremely frustrating, and then I had a conference call with Arushi and the book author about the book cover designs (which went well, by the way), and after spending another hour searching fruitlessly for the perfect stock photography image that the client wants for the book cover, I realized that I was just Completely. Out. Of. Energy.

And when I told Doc that I didn’t think I could follow through on my promise to make spaghetti for dinner, I broke down and started crying.

And then Arushi read my previous blog post and called to check on me, and I couldn’t keep it together. She was so sweet and understanding, but I hate crying on the phone. I feel a little better now, but we still haven’t eaten and that is all my fault.

I’m the kind of person who feels like she’s supposed to be on top of everything at all times, and I don’t know how to deal with not being able to do that. How do you let things go?

I’m extremely worried about Doc. He’s had a rather intense headache (not sure if it’s cluster, he says it’s on the wrong side and feels more like a migraine with light sensitivity and all that) for eleven days straight with no break. For the past couple of days it was slowly getting less intense, but as of yesterday it’s getting worse again. Last night he came to bed at 3:30 a.m. and, as he said, barely felt human. He was whimpering in pain, he couldn’t go completely to sleep yet he couldn’t stay completely awake. I could barely understand his speech.

I’m worried that something has happened, physically, in his brain. I don’t know what exactly, but I think someone needs to take some scans or something to see if they can figure out what’s going on. In addition to the 24-hours-a-day pain, he’s been experiencing double vision and light sensitivity. The thought that something might be growing/breaking/bursting in there is freaking me right the fuck out.

His doctor was out of town last week and his office called in a prescription for him, which of course did almost nothing, and certainly didn’t treat the CAUSE of the headaches, whatever it may be. It was basically just Tylenol with barbituates, so it dulled the pain a little but made him feel “stupid” and zombie like.

His sleep doctor recommended he call a local neurologist, who turned out to be Stuart Black, a world renowned headache specialist. Of course, Dr. Black doesn’t have any appointments until August 2008 (yes, that is a year from now) and the other doctor in his practice is booked up for the next 3 weeks.

What is a person who is in acute chronic pain like this supposed to do in the meantime? What if something horrible is happening? We’re just supposed to wait? Doc’s had bad experiences in emergency rooms before, where they tell him he has a headache and to take some painkillers and go home. I’m not sure it would be any different this time, but I’m at the point where I’m seriously considering taking him in anyway, despite his protests of “they won’t do anything, so why bother?”.

I don’t know what to do. He’s reached the end of his very frayed rope, both physically and emotionally. I’m close to that point. I’m trying to hold it together for both of us but it’s hard.