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ClusterBusters

ann

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  1. ann

    Thor's Hammer

    DB, you're not alone in this feeling ~ I agree that CH is hideous, but the fact that you're on this forum is a positive thing...dealing with this is unfair and exhausting, but know that others around the world stand with you. Hang in there...
  2. ann

    Rant - morphed to Shadows and KIP Scale

    I agree that the "standard" pain scales don't work as related to CH. Pain is such a personal experience and how you deal with it one day might not work the next time. Also fear of the pain is a big part. My husband tells me that when I first went into shock and was hospitalized for dehydration + pain due to 4 month rt side headache, I told him the pain was 100/10. I never said that during the labour, the csection and I never said that during all the 100mile bike rides we did when we toured together. I never used that scale even when I took a full face kick during the swim at Ironman Canada in 2009 ~ I didn't know it that day, but the kick was hard enough that it ruptured the eardrum. I knew the nose was injured as the blood gushed during the rest of the swim but fortunately had stopped by the time I got out of the swim and transitioned to the bike or they would have stopped my race. The Ironman triathlon is 2+ mile lake swim with 2500 other athletes, followed immediately by a 112 mile bike and then a 26.2 mile run. Where I've done it the ambient temps are 30+ celcius. And never, during the training for 4 of these races, did I ever use a pain scale like I have with CH. So for people who think I'm a whimp, I can assure them that I don't posses that character trait. The pain for CH sufferers really IS so bad that the 1-10 scale does not work in the traditional way. Hang in there...
  3. ann

    Weather condition and CH

    Wow...these threads are amazing...I`m totally new to all of this so I don`t get the cycles or patterns yet...but I have to say that as I read these I`m thinking back to all the times I`ve been laid up after scuba diving, rock-climbing, doing a bike ride with alot of altitude or too much heat and I`m seeing that it is very possible that I have been having cluster issues for years without realizing it. Because of heat intolerance we always thought it would be dxed as MS eventually but it seems that heat can be a big trigger for some CH folks as well. Your comments back and forth have really got me thinking about all this! Thanks...
  4. ann

    Rant - morphed to Shadows and KIP Scale

    Hi there I think this is anything but a rant...it's a very valid point of conversation. When I first looked up cluster headaches they were listed as suicide headaches. Well, how many women have this feeling about labour. I have done labour with an 8lb baby firmly stuck and needing huge amounts of force to get her out, followed by a csection in which the anaesthetic wore off part way through....but guess what....they were nothing compared to months of CH. So, I DO think that CH folks should be recognized for the high levels of pain, recurrences and fears of recurrences as well as the fact that most of us carry on with our lives and try to protect our families from seeing us when the pain is worst. Whether it is said out loud, or just to yourself, the person who can deal with CH and still be a reasonable person, is truly the champ. Let others complain because for them, their pain is the worst....of course these are also the same people who have to tell you all about their kid, their vacation, their worries...bottom line, CH trumps the worst labour a few times over!!
  5. ann

    Stupid Question

    Well, it is a known thing that MS is more prevalent further from the Equator, so it stands to reason that other health issues could be too. I even wondered if there is difference in cycles based on barometrics and hours of sun etc. The brain-storming happening on these threads is awesome ~ and I agree...no questions are stupid
  6. ann

    sleep

    Glad for this post. The doctors looked at me like I was completely "off" when I told them I had been sleeping sitting up or draped over my medicine ball for weeks on end when the pain was worst...now I hear that lying flat IS a CH thing for some people. Its a relief to know...and I'll try the melatonin ~ great idea. Thanks!
  7. ann

    Thor's Hammer

    Excellent description...now I know I'm not alone in this world of sore noggins! Thank you for writing this...mine isn't exactly the same as it never fully leaves ~ at least it hasn't since December ~ but it does flare up...thanks for putting it into words when I couldn't
  8. Hello there. I can't tell you how happy I am to have stumbled on this site. I have to say that as I logged on I was in the middle of my first ever experience with full panic. I am SO not that type of person. But, in my 50 years I have never been through pain like I've had since December 2012. Without warning or injury, I developed pain on the Rt side of my head that just never quits. The Rt side of my face is unbelievably painful and my eye feels like someone has poked a cattleprod in and turned it. So, as I face this day in and day out, I do my best to be a good mom to 2 teens and wife to my husband of 28 years. The panic I speak of came as I wandered around the house, in pain and missing my husband more than I have ever missed anything in my life. I haven't experienced panic before, but I did today...and as I read through some of the panel ideas for easing the pain, I found a couple of ideas I hadn't tried...and they helped! Yesterday was a tough day and I truly appreciated my husband sitting quietly while the Dr's poked and prodded me yet again. I'd waited 3 months for the specialist appointment and really, really hoped to get some answers about the severe pain plaguing my generally super healthy and fit body. But, the neuro-opthamology team informed me that the MRI's, visual tests and other testing had effectively ruled out anything except cluster headache. They gave no solutions, suggestions or advice...just the simple statement that "you have a headache, not MS or cancer." After a sad/restless/bewildered and sleepless night I had to put on the my "it'll be okay" face and drive my 17year old daughter and husband to the start of their 7 day bicycle touring trip . I knew how excited they both were and didn't want them to see my sadness, but it really set in when I returned home alone to face the empty house, the pain and the realization that no doctor can fix this. I have never felt so truly alone. As I struggled to calm myself down, breathe and get the pain calmed down, I happened upon this site...I am grateful beyond words. I have alot to learn and I believe this is a great place to start... It is a relief just to see that there are others dealing with this... Ann
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