Doc's Cluster Headache Journal

Friday, February 05, 2010

Son of a...

Defiantly in a "muted" cycle.

I just woke up in my office chair at 2:00am (classic time for an attack) and I realized that the nightmare I was having was my mind trying to wake me up... because I have a little cluster ramping up right now. I don't expect it to get very bad. maybe a three in my scale. over the last two weeks I have gotten a couple of sharp attacks that "poke through" like this, often related to sleep. Like if I take a nap or sleep a lot the night before.

This have been one of the worst though... it may get up to a four before its ready to break.

Really just a reminder to myself that Topamax is not perfect and I am still getting really painful headaches more than any frigging human should have to.

not to mention that I wake up nearly every day with some level of migraine type pain... OK gonna have to stop typing, getting bad.

15 Comments:

  • Some nice posts and I know exactly how you are feeling. I also liked your option to the Kip Scale. My own version only runs to 4 levels but whatever works for you. Just don't give in, which I know you won't.

    By Anonymous General Cluster, at 2/14/2010 9:50 AM  

  • I can totally relate as I'm now in the middle of a cluster cycle myself. How is the Topamax working for you? I hate taking it but do it if I have to...I'd rather deal with the sleepiness, tinglies, and being spaced out rather than being in such unbearable pain. I'm starting predisone today as a "kick start" to the Topa, since it doesn't seem to be working as well this time around. Hope you're doing well. :-)

    By Anonymous Anonymous, at 3/16/2010 2:11 PM  

  • I've been on Topamax before. Doc is wanting me to try it again. The kidney stones where a b!tch though. :( I'll be watching your blog, thanks for writing about your experience.

    By Blogger Teri Eddy, at 3/16/2010 3:14 PM  

  • Doc:

    Just found your site and I feel like I am reading to myself out of my own journal. I have had no fewer than 8 attacks in the past 2 weeks (one night I got a 2 for 1). I went to my Dr. today and asked for a script for oxygen or Imetrex (thought I would give one or both a try) and all she wanted to do was give me a pain killer and schedule a neurological exam. Needless to say I am frustrated.

    By Blogger Dr. E, at 4/01/2010 10:38 AM  

  • I had them terribly, made me suicidal, but the doctor tried blood pressure medicine for me this year and I DID NOT GET ONE HEADACHE!!! I'M FREE FROM CLUSTER HEADACHES! THANK GOD.

    By Anonymous Anonymous, at 4/04/2010 6:12 PM  

  • Hello Dear Friend, I too suffer CLUSTER MIGRAINES, only mine come for a six - eight week period, with up to 10 (!!!) yes 10 attacks a day. They start slow, maybe one every other day, until I reach the full blown 10 a day section. These curses come at all hours, in all seasons, and when they leave (HEAVEN) they are gone for up to 16 monthes...not a single headache, then BANG, they somehow come back. I do not know the triggers, because all of the known triggers, I sometimes use daily...cheese, chocolate, nuts, etc. What I have found to work THE VERY BEST, is 20mg IMITREX NASAL SPRAY...when I feel an attack coming, at the base of my neck, this gives me about 10 minutes to try and abhort the attack...if I can take an IMITREX 20mg NASAL SPRAY in that time frame, chances are 80% I will NOT suffer the attack, and if so, it is of minimal pain. My pain is SEVERE, and I cannot stress that enough...the worst pain known to man!!! I pray for you, my friend, and all other sufferers of this curse. I sincerely hope that you give the IMITREX NASAL SPRAY a try. The IMITREX tablet, simply takes too long to enter the bloodstream, which is why I use the spray. I will follow your progress1 GOOD LUCK! Michael Kameka jabs_1960@hotmail.com

    By Anonymous Anonymous, at 4/09/2010 12:14 AM  

  • Hello again, here is something I forgot to mention to you...and this is REALLY interesting, and worth at least a little investigating... when I was 16 yrs old (I've had these pretty much all my life...) and while visiting an uncle in Jamaica, I had a series of clusters, anyway, my uncle said the MAYBE, these is a tooth on the side of my face where the pain is that the root of said tooth is pressing on a nerve which is causing these headaches...I thought about that, and it seemed feasable...anyway, I didn't give it much more thought, until four years ago, I had a tooth pulled that was on the predominate pain side of my head, and would you believe I didn't get another attack for THREE YEARS??? That three years, by FAR, was the longest dormant stretch to date...they came back in the autumn of 2008, and since they left in mid-November (after starting up in late Sept.) I have yet to have another bout. I was expecting them around Christmas of last year, but so far nothing, THANK GOD!!!!! Maybe you could look a little further into the TOOTH/ROOT THEORY?? I thought that was worth mentioning to you. God Bless...Michael (jabs_1960@hotmail.com

    By Anonymous Anonymous, at 4/10/2010 12:51 AM  

  • I have been getting the cluster attack for many years. Use to miss several days of work a couple times a year. I don't know if this has been mentioned before, but I have found something that works for me. I hope others have success with this.
    The first sharp ice pick in the side of my temple, I go to the freezer and get an ice pack or frozen veggie and hold on the area and numb the side of my head. This works almost every time.
    Good luck,
    JW

    By Anonymous Anonymous, at 4/11/2010 9:06 AM  

  • Just found this through google moments after a very severe 60 minute attack.

    Have been getting them since 97. Diagnosed in 2008. Almost aways beginning around early spring or late summer for 6-8 weeks at a time. In 2009 I was luck enough to have not had a cycle.

    This is my first year trying intranasal zomig.. will be curious to see what you've documented.

    By Blogger Eric, at 4/26/2010 9:31 AM  

  • General Cluster,
    I can't give in... it's not in my nature. Also, I am on the home stretch right? Since I have had them so long and they go away in many folks... eventually.

    By Blogger Murdock Scott, at 4/26/2011 12:03 AM  

  • Anonymous (first),

    Topamax seems to be the only thing that really has effected my cycles, It makes them "mushy", unpredictable and "muted". It is FAR from a perfect answer for me. I also dislike taking it because it dulls me noticeably, but I feel like I have little choice right now. Sorry this answer is a year late... gads.

    By Blogger Murdock Scott, at 4/26/2011 12:07 AM  

  • Teri Eddy,

    I haven't experienced kidney stones... yet. Yikes!
    I hope you are well.

    By Blogger Murdock Scott, at 4/26/2011 12:09 AM  

  • Dr. E,

    I hope thinks have gotten better with your doctor. I know the frustration. If I took all the pain medication that doctors have tried to give me I would be a drooling wreck. Imitrex and I are not on good terms and oxygen only had a small effect for me... but as I often say, people respond differently to all these treatments. I hope you found a way to keep your clusters in check a bit

    By Blogger Murdock Scott, at 4/26/2011 12:16 AM  

  • Anonymous (second)

    I am also thankful that you got some relief. I have not heard of people having success with blood pressure medication for clusters. But if it works for you, then cool!

    Just do me a favor and don't let yourself sink too deep if they return. I am speaking from experience. I have felt the high of thinking I am on to a way to be rid of the pain... I understand the roller coaster ride of feeling OK, then feeling the assault again. It's lonely, Family often doesn't get it, doctors don't get it, how could they really unless they had clusters as well. I can tell you though that there is a point where you get used to the pain... then there is a point in many people when the attacks get less and less fierce. I have lived with them a long time and I hope you never feel the pain again... but if you do, please be strong.

    By Blogger Murdock Scott, at 4/26/2011 12:40 AM  

  • paul here....just starting mine 11:30 ever night ...my last time i had them it was only at night lucky i mite say compared to all day atacks 3 or 4 a day at work...

    im going to try only taking IB's this time since nothing realy helped last time ....good luck all !

    By Anonymous Anonymous, at 9/12/2011 4:51 PM  

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