Doc's Cluster Headache Journal

Monday, October 01, 2007

I was roused from sleep by a cluster headache I dont remember much about it however I am starting to really run out of energy and the days and attacks are sort of running together for me. I think It was about a level 4-5 I drew a bath and cant tell you how long it lasted I fell asleep in the tub and thats were Katy found me this morning when she got up for work. I went back to bed and got a couple hours of sleep.

When I woke I felt pretty good and was sorta of thinking I would get a break today. I did some shopping and picked up the different brand of headache nasal spray because the other night when our friends asked if it had worked for me I told them it had no effect but since it was a different brand I had tried (same active ingredient) they seemed to think that might make a difference and I am trying to be open minded about homeopathic remedies even though it seems unlikely that a few herbs would have much effect against the terrifying pain that I get. But all morning and afternoon I felt pretty good, deeply tired, but mostly pain free.

I made the mistake of letting myself fall asleep around 5:00, I dont know if I have expressed this before but I think one of the worst "triggers" I have for cluster headaches is sleep. any time I take a nap during a cycle I am almost guaranteed to get a attack shortly after waking. Today was no exception. It ramped up slowly but maxed out around a 5-6 for about 20min. It started falling off but took a very long time to decrease in strength. actually it has never completely fallen below a 1 or so... Its 9pm now and I expect I will have it for the remainder of the evening.


  • This is so totally out lives! My husband Rick has had clusters for at least 10-12 years. at first we didn't know what they were. We're both migraine sufferers, but this was different, and not chronic in the beginning. The past 5 years have been non-stop clusters with small periods of "less severe" still wake him up clusters. Our lives are Oxygen tanks, ice packs, ercaf, axert, Temazapam for sleep and baths that flood over in the night if I don't stay up. Rick barely sleeps and I have interupted sleep until I'm exhausted as well. I have tried to video tape but can't get through the whole headache. We now get the K tank of oxygen which is the big one 4 foot tall, cost wise it's better, along with e tanks for in the car.We don't rarely tell people what our lives are like, it's too hard to imagine. We have tried everything, Prednisone is the best but only gives a short relief period. I will follow your information to see if there is something we haven't tried that works for you. I'm so sorry for your situation. We both work, Rick is self employed in construction and can leave and quit as needed. I keep a schedule and it's difficult, no one knows what kind of night we've just been through. Rick just had a "niner" her calls it. much screaming lasted about 45 minutes, he's coming down now. I came to look for more new info and research prescriptions we have full bottles of and figure out why he didn't take them. He keeps going back to Ercaf, but hates it. Thanks for listening.

    By Anonymous Anonymous, at 10/21/2008 9:04 PM  

  • anonymous,

    I am glad to meet you but sorry that your husband and I have this thing in common.

    I can tell you this, and maybe it will offer some hope, there have been times that lasted for years in my 17 years of having these things that the cycles started running together and I was afraid I was or was going to become chronic. One cycle would start to ramp down but before it was gone I felt a new surge.

    But the good news that they eventually slowed down again and the "gaps" between them started reappearing and getting longer. I can't guarantee this will happen but I am sure hoping it will for work that way for Rick.

    I am currently seeing a neurologist and she has me on Topamax as a preventive. Its a bit like throwing a wet blanket over the pain. There are some strange possible side effects. But I can honestly say that it has had some effect on controling my headaches. Maybe one of these type of drugs that are often used as anti-seizure medication could be of help to "interrupt" them for a while and maybe get him out of this long pattern.

    The bottom line for me is that these medications like Topamax have an effect on the headaches but also have some pretty big side effects. I may be stopping them soon, but for someone in your position, I think it would be worth talking to a neurologist and see if they think Rick could get a break with something like Depokote or Topamax

    I am lucky enough to be self employed myself but I am worried that I keep burning good will with my clients as I miss deadlines and fail to meet goals due to headache issues. On the social front I completely understand what you are saying. Friends and family just cant get their head around such a painful and life altering problem. And I am not really sure I want them to understand how I act during a really bad attack. Its bad enough that my wife has to witness it.

    Good luck to you both and I really Hope you get a break soon.

    Damn-6:38am I need to try for some sleep. I hope this is somewhat readable... I an dozing off is I type. : )

    By Blogger Murdock Scott, at 10/26/2008 6:41 AM  

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