Snowflake Posted March 22 Share Posted March 22 Wouldn't it be nice if there was a simple book of what this condition does to a person for the sake of understanding to everyone else. I know you probably have the beach boys playing in your head right now and I'm not talking about the pain of our condition. 90% of people will never go into this site to understand cos let's face it, they don't care enough to do so. I'm referring to the state of mind in all it's "splender". Anyone else has no filter during CH seasons? I feel like Eminem on steroids and I'm pissing off everyone around me. Obviously I don't care either right now however, people are noticing change in my responses and actions. So I shut up most of the time or try to avoid contact with anyone. Even my spouse. She does know the "drill" however the questions. The simplist of questions can start a fire in my eyes and what comes out the mouth, are stuff that neither of us expects. As for being out on the roads..!! It's like I have a license to be an ass. My D3 update: Sitting at 259. Hits max 3 per day @ 5 to 7 mins aborted with O2. No nocturnal attacks. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted March 22 Share Posted March 22 @Snowflake There is an excellent book that was written and published several years ago by a good friend who is also a clusterhead!! Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man https://a.co/d/3kZwmXJ Dallas Denny 2 Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 22 Author Share Posted March 22 @Dallas Denny Hi Dallas, Thanks alot buddy. Will check it out. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 22 Share Posted March 22 (edited) Also ... 20 Facts brochure 8-24-13.pdf Living with CH - 8.5x11 - 9-15-14[2].pdf Edited March 22 by CHfather 2 Quote Link to comment Share on other sites More sharing options...
Chris Moore Posted March 23 Share Posted March 23 I know how easy it is to be so mad at this condition and the number it does to us. I find that for me, practicing being as kind and compassionate to myself and then to my loved ones really does help. Staying as calm and peaceful as I can (both while having an attack and during pain free time) helps to lessen pain and attacks overall. I know it is SO MUCH easier said than done. But just try and practice compassion in every way you can, starting toward yourself and it helps. Sometimes what I do to facilitate this is I imagine myself as a 16 year old kid getting these attacks for the first time. I think about how scared he was and how alone he felt and how much pain he was in. I feel so, so sad for him and just want to hug him and tell him everything will be ok and comfort him the best I can. Then I take all of those feelings I’m experiencing toward the young version of me and extend them toward present day version of me. Compassion and care and empathy toward myself. For me it helps to calm me down and lessen overall pain and suffering. 9 Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 24 Author Share Posted March 24 On 3/23/2024 at 2:06 AM, Chris Moore said: I know how easy it is to be so mad at this condition and the number it does to us. I find that for me, practicing being as kind and compassionate to myself and then to my loved ones really does help. Staying as calm and peaceful as I can (both while having an attack and during pain free time) helps to lessen pain and attacks overall. I know it is SO MUCH easier said than done. But just try and practice compassion in every way you can, starting toward yourself and it helps. Sometimes what I do to facilitate this is I imagine myself as a 16 year old kid getting these attacks for the first time. I think about how scared he was and how alone he felt and how much pain he was in. I feel so, so sad for him and just want to hug him and tell him everything will be ok and comfort him the best I can. Then I take all of those feelings I’m experiencing toward the young version of me and extend them toward present day version of me. Compassion and care and empathy toward myself. For me it helps to calm me down and lessen overall pain and suffering. Hi there Chris. Thank you so much for taking the time to inspire me in ways to handle my situation. I truly appreciate it very much. I assume this is a safe place to spill my guts without being judged? Here we go: Just like you, my battle started when I was 16. But let's rewind a tad. Between the ages of 10 till I was 14, I had been sexually and violently abused by 3 people. Continously during this patch off my life, holidays, birthdays or any special occasions were taken away from me cos this when it was at its worse. These people are not my immediate family. Anyways, I hid this from everyone up till today as I'm sitting at 45 years old. When I was 19 I couldn't study cos we couldn't afford it. My dad was ill and my mom worked 2 jobs. So I went straight into the job life so to speak, making whatever money I could so we could put food on the table. Age 22 I managed to save up enough to study and achieve a diploma. Things started looking good for change. 2001. New years eve, I was on my way to work. Didn't have ea car as yet so I took a taxi. The taxi back wheel got loose at 140kmph and the entire vehicle rolled over about 3 or 4 times before landing on its roof. I managed to kick out the back glass and climbed out. Helped who ever I could. Cellphones where flung out of the taxi however I managed to find mine to call for help. But just felt so dizzy that I fell onto the road. I could hear something screaching only to find a truck tyre inches from my head. The drive jumped out and rush to me. My shirt was soaked with blood etc. So he just ripped it open to check for injuries. I still can believe that I never had a scratch. It was somebody else's blood. 2011. My 1st hip replacement. 2013. My second hip replacement while my wife was in the same hospital sorting out our second miscarriage. And I know what going through a miscarriage is being a male in a marriage. I have seen also what it does to the female. It's torturous. There aren't words actually and I tried to support from I was. We currently do not have kids and we don't want any. We just have a dog which we latch on to. And I can see that I (as much as I love my dog) am second to him. Which kinda sucks in a way. Moving on, I had been medically boarded from work due to the headaches and hip replacements even though I loved my job. They put it down to me in a very sly way using the fact that they refused to let me carry my O2 to work. I fought them since they 1st brought it up in 2014. But they got me out on 31.03.2021. So yeah my salary took a plunge and I'm left at home staring at the walls. I turned my hobby into a small business which is electronic repairs, however I stopped for a while now since my brother passed last year. Still dealing with my loss. I always wished it was me and still do. To be honest, I'm not sure if others feel this way, but I am not afraid of dying. Actually alot of people are not afraid either. I guess they fear of how they will die. I so welcome it. In fact I had 2 failed attempts at suicide. Yes I'm seeing a psychologist and psychiatrist which I also put on hold since last year. ... And now the CH season starts. I am sorry for the long read and if I said or mentioned anything that is not allowed on here. I am glad I did find this group because I did learn alot, especially the D3 Regamin and O2 treatment. Even though the damaged to my self has already been done. I may require bilateral knee replacements soon as well as the 15 year intervention regarding my hips. I am sure others have been through worse in their own way and path of life and this is not to undermind what you all are going through as well. Just know that I appreciate you all for the advice and direction in managing this condition atleast, even though I have no control over my past. I guess all that's left to say is Thank you all from the bottom of my heart and pain free wishes always. 1 1 Quote Link to comment Share on other sites More sharing options...
xBoss Posted March 24 Share Posted March 24 (edited) I go off into the higher realms of consciousness during cycles. It's pretty easy to do when you are exhausted from no sleep and been tripping on stuff for weeks. During the worst attack in my life I heard dancing queen playing in my head note for note like it was really playing. That one was weird! Edited March 24 by xBoss 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 25 Share Posted March 25 Well there's no denying that you went through some terrible experiences and my heart hurts for you for that. While you can't change your past, you can create your future. With everything you've endured, I would imagine that you are incredibly strong (you are a cluster head afterall)! Keep your chin up and continue putting one foot in front of the other. Our past plays a huge role in who we are today. If you were stripped of your past you wouldent be YOU (not saying that you should have went through what you did) just that your stronger then most will ever understand because of it. Keep being STRONG... You got this! 2 Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 25 Author Share Posted March 25 5 hours ago, BoscoPiko said: Well there's no denying that you went through some terrible experiences and my heart hurts for you for that. While you can't change your past, you can create your future. With everything you've endured, I would imagine that you are incredibly strong (you are a cluster head afterall)! Keep your chin up and continue putting one foot in front of the other. Our past plays a huge role in who we are today. If you were stripped of your past you wouldent be YOU (not saying that you should have went through what you did) just that your stronger then most will ever understand because of it. Keep being STRONG... You got this! Thanks alot friend. Means alot to me. Seriously does. Wishing you a lovely day. 2 Quote Link to comment Share on other sites More sharing options...
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