...until morale improves. Funny, but a good description of what is going on. Yesterday was just a continuation of the "hit parade" and today isn't looking good. Storms are already moving in and will be moving through for the next 36 hours or so. Oh joy! Time to lock up the guns and hide the ammunition.
Oh my gawd!!! The past 24 hours have been the worst in a long time. I have been hit so many times I've lost track. I just about recover and start to feel normal again then BAM! here comes another one. I don't usually get nausea with the attacks, but there have been so many and they have all been so severe that I'm sick to my stomach. I can't take too much more of this. If something doesn't break soon, I am going to break. I'm so tired, but am afraid that as soon as I start to sleep, I'll get hit again so here I sit at 2:30am tired, weak and dreading the next hit.
The Methysergide came in, but because of the possibility of some pretty freaky side effects, my wife made me promise to hold off starting it until this weekend when she can be home with me in case I need to go to the hospital or something. She really tries to take good care of me in spite of myself.
Oh, well. I suppose I should go to bed. I'm falling asleep at the keyboard. Even if I get woke up, I'll at least get some rest. I have things to do tomorrow that require me to function on a semi-intelligent level. I'm trying to get this down before the next wave hits. I know I am probably rambling. Sorry.
Well after two fairly good days the weather turned downright nasty yesterday and since barometric pressure changes can make my life miserable... Four different storm fronts moved through yesterday with the whole shebang, heavy rain, golf ball sized hail, thunder, lightning, rotation in the clouds (beginning signs of a tornado) and a red hot poker in my right eye - over and over and over again.
Today has been better, although the shadows are ruling the day. Sahara's mom is working so I got to babysit today and will again tomorrow. YEA!!! It was too cold and wet to go outside, but we had a ball inside. We played with the Playdough and the hoola hoop, danced to the Crazy Frog video, ran through the house playingt chase and hide and seek and just basically tore the place up. Oh, well. We had fun, that's all that matters. I'll clean it later after I recover. LOL
Yesterday was a much better day. Only 3 attacks and only one that was a real headbanger. Sahara was here and we watched Barney and Blue's Clues and played in the house until it warmed up enough to go outside. Once outside the race was on. First to the swings, then to the sand box then the tricycle, the slide, back to the swing - repeat, repeat, repeat... It got hot enough this afternoon that she could play in the pool again. She got a real kick out of splashing PawPaw. Truth be told, so did PawPaw. LOL
My youngest son (who is a Junior in High School) went to prom last night. He looked very handsome in his tux and his friend, Jennifer, looked like a princess. Got what I hope are some good pictures. I can't wait to get them developed.
Got a call from a clusterhead friend from clusterheadaches.com. He was episodic, then went chronic for 8 years. He's been pain free for two months now thanks to Verapamil. It's always heartening to hear of someone who was chronic getting a break. Gives me hope that it can happen for me. Verapamil didn't work for me, but then, neither has anything else. I should get to try Methysergide starting next week. I'm looking forward to it, but then again, it's kind of scary as well. Because Methysergide is an ergotamine based compound, I won't be able to take Imitrex if I get cluster attacks. All I'll have is oxygen. It should be, uh...interesting.
Well, I did fall right to sleep. Was just totally exhausted, but "you know who" came back to play some more at 5:47. Jumped up and hit the oxygen. 10 minutes later the oxygen killed the attack. Was pretty much up for the day after that. A whole, what, hour and 15 minutes of sleep? Got the wife and kids up and off for the day. Got the house cleaned up between hits and fixed a big pot of ham and beans and two batches of corn bread - one regular and one jalepeno. Jane's parents came over as did Sahara. We were having a fine old time visiting and playing with Sahara until I got hit again. Jane made my excuses while I hurried from the room holding my eye and ran into the door facing on the way to the oxygen tank. After about 10 minutes of sucking O2, I returned to the living room. Sahara had gone to her room to play. After a few minutes of her being too quiet, Jane went and checked on her. Poor little thing had crawled up in her bed and fell asleep. So cute. At the start of one of my attacks, she said, "Pawpaw's head hurts" and crawled up in my lap and kissed my right eye and said, "All better, Pawpaw." "Yeah," I told her. "Sahara kissed it and made it better." Then went for the oxygen tank again. Geez, I hate this. Another one of those days when there were too many hits and not enough sleep. Sometimes I feel like all I am is a walking headache.
and it's one of those nights. The Beast is toying with me and having a grand ole time. Heavy shadows all evening. Can't sleep. My right eye is swollen half shut and tearing up a storm, my nose is plugged on the right side and running at the same time, the ache is creeping into my upper teeth and still the hit doesn't come. Sometimes I swear I'd rather just have the attack come and be done with than go through hours and hours of shadowing. I've tried heavy doses of caffeine, icepacks, oxygen, nothing is breaking this shadow. I don't dare waste a trex injection on it. I have to save those for when I am REALLY hurting. It stinks having so little medication that you have to pick and choose which attacks to abort and which ones to ride out. A person should not be forced to endure these attacks when there is medication that will stop the pain within minutes. I know, I know, I'm having my own little pity party here, but darn it - I'm hurting and there's nothing I can do to stop it. To heck with this, it's 4:00 in the morning and I have a lot to do tomorrow, I mean today. The wife's parents are coming for dinner and the grand daughter is spending the night. If I don't get some sleep I'm going to be worthless. I'm going to try a shot. No. Must save it for a real attack. But after all these hours, don't I deserve some relief? That's it. I'm doing it. Oh God, there's one less real attack I can abort, please let it work. Here it comes. I feel it creeping up the back of my neck, like someone puling a warm blanket over my head. A few more minutes and I should be free. I hope. Yes! I can feel it draining away. It's 4:25am. To bed I go. Hopefully I can sleep now. Hopefully...
Well, yesterday was the day from hell, but I made it through. Had a total of 8 attacks yesterday, the last one at 11:20pm. I am so glad oxygen works so well for me. I use a new mask called a Clustermasx which has a better face mask and a larger reservoir bag than a standard non-rebreather mask. I can actually take full deep breaths of oxygen and abort almost twice as fast as with my old mask. Thanks Ben! Because the O2 works better and faster with the new mask, I only had to use the imitrex injections twice. I use the vials and .5cc, 31 gauge, short needle syringes. I like this much better than the stab and slam StatDose injector system. I have discovered I can abort an attack with 1/2 a dose (3mg) which means I can take 4 shots in any 24 hour period.
I didn't accomplish everything I wanted to do yesterday because of the attacks. I did manage to get the wife's new redbud tree planted. I started work on the tower part of the grand daughter's playground, but wrenched my shoulder somehow while digging the post holes so I'll have to put that off until later. Hopefully I can get it done by this weekend so Sahara can play on it.
So far today has been a much better day, but from the looks of the radar, tonight is going to be a bad night. Changes in barometric pressure can be a massive trigger for me and there is a large storm front building up in North Texas that looks like it might be headed this way. I'll be keeping a close watch on that. Oh, my head...
No, I'm not talking about the old soap opera. Shadows are a sort of pressure or presence felt on the cluster side of the head The pain level is usually around 1 - 3. They can either be a warning a hit is coming, hang on after a hit is over or sometimes just come and hang on for a while and never materialize into an attack. Anyways, I'm having heavy shadows today, just shy of a 4 on the Kip Scale. Depression is also weighing me down pretty hard. I got woke up this morning at 2:00, 3:25 and 5:15, then up at 6:00 to get the kids off to school. Got the wife up at 7:15 and off to work. Got hit again at 7:50 and 10:00. That's my 5 for the day, except it's only 12:45. There's a lot of day left. How many more do I have to suffer through today?
I'm waiting on a new prescription. STILL! I sent it in over 2 weeks ago. I finally get a call from the insurance's home delivery service yesterday, saying they can't fill the script, because the med isn't made anymore. Don't these people talk to each other or write notes in a person's file or something? The script is for Methysergide, the generic name for Sansert. Sansert has been discontinued in the US, but a compounding pharmacy can still make it. I called them about a month ago to make sure they could fill it before I sent it in to them. I received an e-mail saying yes they could fill it, go ahead and mail it in and they would send it to their specialty pharmacy to be filled. So after 20 minutes on the phone yesterday, they finally figured it all out and sent it over to the specialty pharmacy. Today, I get a call informing me that my prescription had to be sent to their specialty pharmacy and gave me the number to call them to track the status. Hello? Talk about the right hand not knowing what the left hand is doing! Sheesh!
Oh, well. Back to the daily grind.
You'd think that for just once a person could get a break. Ain't happening. I got an extra wake up call at 5:15 in the morning on Easter morning for a total of six attacks yesterday. Between and in spite of the hits, though, it was a good day. My grand daughter, Sahara who is 2 1/2, came over for the day and to spend the night. We had a ball hunting eggs and eating candy. It was a hot enough day that I filled her little wading pool and we played in the water. Had a great supper of ham, macaroni and cheese and corn on the cob with German chocolate or carrot cake for desert. We ran and played in the pool and on the swing set and then jumped and danced inside when it got too dark to play outside. Come bedtime, she was out like a light in no time flat. Pawpaw was pooped, too, but not too pooped to get his usual wake up call at 1:30 this morning. Well, I'd better finish this. Number three for the day is coming on quick. Some things never change. *sigh*
You lie there sleeping - peacefully, quietly enjoying your slumber - then it hits you. You sit up in bed praying it is just a bad dream that has awakened you, but you know better. Your nose is running, your eye is watering and you feel like someone heated up a railroad spike until it glowed red and drove it into your eye with a sledge hammer. You get up trying not to wake up your better half and stumble to another room pressing the heal of your hand into your eye. You would not be surprised to draw it away and see it covered with blood. You pace the floor or sit in your chair and rock back and forth like a madman, holding your head. You want to scream the pain is so bad. You would do anything to stop this torture and you bang your fist into your head and eye trying to distract yourself from the pain. Nothing works. It never does. You curse God for bringing this pain on you. You tell Him, "cure me now or kill me." Either way would seem a blessing to you. Time drags slowly by as you cry and writhe in pain and pound on your head. An hour passes by, then two. The pain is still there boring, burning into your skull like a drill bit on fire. Then, almost suddenly, the pain starts to drain away. Within minutes it is gone and you collapse in your chair oh so tired from your battle, yet afraid to go back to sleep for fear of another attack.
Sound like a horror movie? It's not. It's a cluster headache attack. Cluster headache is rare, affecting approximately 0.1% of the population. Many sufferers go undiagnosed or misdiagnosed for years. Years being told they have migraines or sinus infections or worse, that they are drug seekers or are exaggerating the pain. They are prescribed medications that do not work, except maybe to knock them unconscious. Many go through unnecessary medical procedures, like sinus surgery or having all their teeth pulled. Some get to a point where they can't take it and kill themselves to escape the pain, hence the nickname "Suicide Headaches."
Welcome to my Blog. I am Mike, aka Gator, and I am a cluster headache sufferer. I have the chronic form of the disorder, suffering 3 to 5 attacks every day for about 2 1/2 years now. Fortunately for me, I have been diagnosed and have ways to abort these terrors we clusterheads call the "Beast." With 100% oxygen at 15 liters per minute via a non-rebreathing mask, I can abort about 75% of my attacks within 15 minutes. For those where oxygen does not work, I have Imitrex injections. These work to abort a good 95 to 99% of attacks. Unfortunately, there are some attacks that nothing will stop and I end up playing out the above scene for two or three hours until the attack is over. My neurologist and I are still searching for a preventative medication that works for me. So far nothing has.
In March 2004, I found an extremely informative and supportive website just for cluster headache sufferers and their families. www.clusterheadaches.com The owner of the website is a cluster headache sufferer himself. There are forums on Medications and Treatments, Cluster Headache Specific information, forums for Supporters and Children and a general BS forum where people discuss anything and everything. The people there are the best. Always willing to lend a shoulder and an ear or give a swift kick back into reality as appropriate. They definitely pulled me through a very dark time in my life when I was seriously contemplating suicide to escape these attacks.
I am also a member and current Vice President of the Organization for Understanding Cluster Headaches (O.U.C.H.) www.ouch-us.org We are a non-profit organization whose mission is to provide information and emotional support to cluster sufferers and their families. We encourage, support and participate in research to develop new and improved therapies and practices for treating cluster headaches. If you are a cluster headache sufferer or you support one, I encourage you to check out both of these websites and to join O.U.C.H. and help us work for better treatment options and maybe one day a cure.
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