Nov 26

I was just stumbling around downstairs and trying to get it together and I was muttering to myself as I am prone to do and I said "it's like I'm barely fucking human". Thats a good one line summary of what I feel like.

Friday Nov. 25

I feel awful at the moment. I don't know if other people get this but during a cycle I cant see movies without getting pain from it... I assume its the flicker of the screen. We went to see a film this afternoon and I am now trashed... only about a 3 or so during the spikes but its bad because I'm so tired and down.

The last couple of weeks have been tough. Almost constant headaches, the intense night time versions seem to be over. but now comes the "ramp down" When I first started getting clusters it seemed like when the brutal attacks ceased then it was a very short time until the lesser ones stopped also, But over the years it seems to be changing and now they can take months to taper off. I have been feeling more and more Isolated from my friends because I am getting to the point where I say crazy and offensive things due to my state of mind/exhaustion. I cant be "myself" around people because they could never understand... I have to perform. I have to keep up appearances for their comfort.

I fought last night with one of my best friends because he insinuated that I was jaded, selfish and perhaps was not progressing creatively because I wasn't willing to help other people achieve their creative goals. I felt bad because I sort of went off on him... I felt he was terribly wrong and that I have spent enormous amounts of time doing just that.. My reward seems to be people not taking my creative efforts seriously or worse taking ideas directly from me and claiming them as their own. All the effort I put into encouraging and supporting artistic endeavors of others seems to be forgotten... I am back to ground zero with no credibility with even my close friends.

I keep hoping that someone will pick me up and offer to help ME. But I can see that Karma will not be returning to me in this life. I don't think people realize how tired and beaten I am from the years of plugging away at pulling myself out of poverty, spending a quarter of my life in pain and still trying to create works of art and passion. When is it my turn to have someone help me achieve my goals?

Katy is the exception of course. If I didn't have Katy I would be gone... I really think thats true, I would not have survived this far, at least not as I am... I would be an addict... recluse... insane... deceased... some form of surrender. If the worst of it is that I'm a bit bitter... HELL! I will take that... I earned that much.

Doc.

november 20, 2005

long and low.

long and low.

long and low.

that's pretty much what's been going on for the past couple of weeks, and it doesn't feel like it's worth posting about. this generally means the cycle is coming to a long, exhausting close.

it's always interesting to me how neither of us posts or writes anything in the journal or does any research on clusters when he's not getting the intense ones. i guess that when he's not in pain, pain is the LAST thing either of us want to think about.

he said the other day, and it's something i've often thought, that it's almost preferable sometimes to get the intense ones than these 24/7 level "1"s or "2"s because they just wear you down. it isn't as bad, painwise, but it never ever stops.

November 13, 2005 :: 11:18 p.m.

he's got one right now, that's getting kind of bad. he's had a 1 all day long, and now it's getting worse. it's at a 2, and he thinks it might get as bad as a 3.

he keeps having these "long and low" ones almost nonstop.

they ARE DEFINITELY clusters.

he's utterly exhausted. he's grouchy, silent, and depressed and feels "stupid" all the time... beaten down, brain dead, like the world doesn't exist without pain.

part of me thinks the bad ones are easier to handle, because they fucking END. these don't. then the other part of me thinks these are easier to handle, because they don't bring him to his knees, asking what he has done wrong to deserve them.

we haven't posted in a while because it seems pointless to post daily and say that the same low-level CH that has been with him for the past week is still with him. no changes.

November 10, 2005

Poor Doc is just completely exhausted. Last night I woke up at 2 and he wasn't in bed. I got up to go find him and he was still working on the computer. Then I woke up again at 5, and he wasn't in bed again. This time he was sacked out on the floor downstairs with the lights all on and an infomercial on the TV, loud. I made him get up and come to bed (he said "I can't... I can't... wait... OK, don't think about it, just do it. Don't think about it, just do it.")

I guess that the good news is, he hasn't had any awful ones in the past couple of days. I don't even know that he's had any nighttime visitors at all -- or at least that he's been able to wake up for. He's also letting/making me sleep through the night and not get up when he's up. I have such mixed feelings about that. On the one hand, I guess it's important that at least one of us get a good night's sleep so I can handle household business and keep us on track with our schedules and lives. On the other hand, I know that my presence while he's in pain is somewhat of a comfort, so I feel horribly guilty staying in bed while he's moaning in pain in the bathtub or downstairs.

His plan may not work, as demonstrated the other night -- was it Sunday? Monday? I can't remember now -- when I got up in the night when I heard the tub running, and he made me go back to bed. I laid awake for about 2 hours feeling guilty. :)

November 6, 2005 :: 4:15 p.m.

No bad ones today, at least not that he's told me. Yesterday I had somewhat of a nervous breakdown (feeling overwhelmed by this cycle and lots of other things going on our life, just came to a head). Later on, after I quit feeling sorry for myself, we decided to go to a movie. He had a mild one all day yesterday and luckily the movie did not seem to make it any worse.

I think he slept through the night, too.

Today has been a pretty good day. I told him that he seemed cheerful and alert, and he commented that he was alert enough to realize that he was a zombie. LOL.

November 5, 2005 :: 8 p.m.

Still have a headache.

Sometimes I get these... I call them "long and low." I don't think it's very typical of clusters. I read people describing "shadows" but this seems different to me.

It's like a spring... in a normal cluster the spring gets compressed very quickly. In one of these, the spring gets compressed very slowly and not that much. Like the pumping of an accordion. They hover around a 1-2 and can last for a very long time.

I hesitate to even describe them because I don't feel like defending against the people that would suggest that they are not cluster headaches... The "Kings of Pain" don't take kindly to any murkiness in their condition, or at least that is my experience.

I know that I don't have them as badly as some people and that makes me ashamed sometimes. What right do I have to complain when at worst I get 2 or 3 bad ones a day over the course of 6-12 weeks and really I would say during the few weeks at the beginning and the few weeks at the end it'ss mostly just one a night.

The "long and low" thing is relatively new, just the last few years. I was hoping that it meant that they were "changing" and that the screaming 8-10 "beg for death" attacks were going to stop... but that doesn't seem to be the case.

In case anyone reads this and is tempted to reply with the "clusters don't last long so you don't have clusters" dogma, please take a moment to consider:

1. These are rare in me. Most of my attacks are typical "textbook" cluster attacks.
2. Nothing in nature is EVER completely uniform... variation is the order of the day.
3. If I do have something that's most of the time exactly like clusters but is rarely a bit different, then what the hell does it matter?

November 5, 2005 :: 11:20 a.m.

Katy woke me up about an hour ago and I realized I still hurt. I think I have been sleeping through a 1-2 since the 5:50 a.m. attack. Hard to tell if this is a new one or the same one that never completely ended.

I passed out again and woke up on my own just now and it's bad. But it kinda sucks in the fact that it doesn't feel like just a cluster. It hurts behind the right eye but I also feel a different intense pain across my brow and forehead...

I honestly think I have both a mild cluster and a migraine...

12:00 p.m. Both headaches are bad. I can clearly feel them as separate almost competing forces. I want to lie still and yet I also have the normal cluster behavior too.

By around 1:00 the cluster started to break a bit and the other I think is responding to some Aleve.

Still very annoying.

November 5, 2005 :: 5:50 a.m.

He woke up with a level 5 at about 5:50 a.m.
It quickly built to a 6-7 and lasted about an hour, with bad spikes.

I filmed this one.

Any film I make will never capture what he's really feeling. Just like how trying to describe a dream is quite useless at actually communicating what it was like, I fear that whatever I do is not going to be able to get across how horrible it is, because the nature of the medium doesn't allow for it. I don't want to do it if I can't get it right.

November 4, 2005 :: 4:40 a.m.

I woke up and found him sound asleep on the bathroom floor, all lights out, at 4:40 a.m. It was like he'd tried to make it to the bath but sleep won out over the CH. He was able to crawl back to the bedroom.

7:10 a.m. He woke up with a 2-3
7:19 a.m. Now it's a at a 4 and climbing
7:35 a.m. Drifting in and out of sleep as I'm getting ready for work; still at a 4
7:55 a.m. Still drifting in sleep, says it feels somewhat better, I have to leave for work now

November 3, 2005 :: 3:00 p.m.

After lunch I passed out... just tired. I was petting a cat and woke up about an hour later face down half on half off the couch. Since its been about 4 weeks of nightly cluster attacks I am starting to really feel the secondary effects of exhaustion and reduced mental capacity. Also most of the time now I feel like something heavy is lodged in my head and shifting around, even when it doesn't hurt is is distracting.

November 3, 2005 :: 2:15 a.m.

I woke up about 2:15 when I heard the bathtub running. I was so sleepy I don't know that I fully woke up. I laid down on the floor next to Doc in the tub and I think I went to sleep there. I woke up about 3 and asked him if he wanted to go to bed; he woke up and said no, the CH was still there, pretty bad. I went to bed but set an alarm for 45 minutes later.

He still didn't want to go to bed at 3:45 so I went back to bed but I don't know that I managed to get another alarm set. So I don't know what time he finally came to bed.

I feel like a bad wife for letting him sleep in a tub of cold water. I'm supposed to be taking care of him and I'm not doing a very good job of it.

The CH seemed bad (of course) but not unbearably so. I didn't ask him what level it was at. I was pretty out of it.

November 2 :: 4:45 a.m.

4:45 a.m. I got up when I heard the tub running. He said it's like a 5 with spikes of 6 or 7. He's been up a while.

Was asleep downstairs when I found him at 2:55 a.m. Came to bed then.

I'm filming this one. It's so hard to sit here with the camera while he's in so much pain. But I can't do anything about it. I'm utterly powerless to stop it, I can only sit with him and provide maybe some small amount of mental comfort. I guess I might as well tape it as long as I'm busily doing nothing fucking else.

He says that he was too tired to pace, so he came up to the tub.

He's being funny and acting for the camera. My god, how can he do that?? I think he's actually mostly asleep too. So strange.

5:25 he's feeling somewhat less horrible and is drifting in and out of sleep in the tub.

MY DILEMMA AT THIS POINT always is: a) do I wake him up and drag him back to bed so I can go to sleep, because there doesn't seem to be any point in my valiantly trying to keep myself awake just so I can stare at him sleeping in the tub; b) do I leave him in the tub (or wherever he's passed out) and go back to bed myself; or c) do I stay awake with him until he wakes up on his own, and then put him back in bed?
I don't want to do B or C but A always seems like it's too soon to make him wake back up... it's like as soon as I hear him snoring I know he's asleep and at least not consciously feeling it anymore, and I want to pack it in and go back to bed but am torn because I can't just leave him there by himself in the water.

Eh... I hate this

... and Oxygen, too

I forgot to add to the list:

OXYGEN: didn't seem to work very well. Maybe took the edge off? Doc can confirm or deny this. I think that we concluded that it was pretty useless and it was more of a pain to wrangle with the insurance company about it than the O2 was helpful.

November 2 :: 8:10 a.m.

Woke up from a strange dream with a 2 or so. It quickly ramped up to around a 3.

I think it's all the same headache and it never really went away from earlier. This sucks because I HAVE to work today, I am so behind...

Heading to the bath.

9:01 just woke up in the bath. It seems to have broken... (sub-1)
I can still feel it but not pain as much as something odd and "out of place."

I think this is good news as I really thought I would be having one all day.

Half-asleep thought of the day: I am the CCO of this company. (Chief Cluster Officer)

November 1 :: 7:10 a.m.

Went to bed @ 4:30. Sometimes I don't want to sleep during cycles.

Woke at 7:10 a.m. About a 3 so far. I really want this to stop. Drew a bath but it didn't look so good because I used a gel pen. So I put some water in the tub... :)

I did my wake up/pass out thing for a long while until Katy got me out of the tub around 8:00. I think I was in longer so I wonder if my start time was a hallucination :)

This hurts. I still have a headache (1-2) and my fingers are so wrinkled it's painful. I think this one is gonna last all day which sucks because I'm behind on work.

List of Medications.

LIST OF MEDICATIONS DOC HAS TRIED:

1. Aleve (naproxen sodium): doesn't do shit for these.
2. Maxalt: bad side effects. (2000)
3. Zomig: seemed to sorta work ok (2000)
4. Imitrex: makes your heart explode... resulted in horrific rebound (2000)
5. Vioxx: banned by the FDA (2004)
6. Isolyll: "makes me stupid but will kill pain" (1996)
7. Prednisone: steroids. Makes me twitchy, insomniac. Unsure of effectiveness (2003)
8. Axert: prescribed in 2003 but not used; trying right now (2005)
9. Frova: major side effects, dizziness, dry mouth, nausea, etc, but maybe helped (2004)
10. Atenolol: may take 2-3 weeks to work. Can't tell if it did anything (2004)
11. Amitriptylene (1996)
12. Relpax: have samples, have not used yet (2003)