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Everything posted by xBoss

  1. xBoss

    Make this site as accessible as possible. :)

    The problem with any forum is that you can answer the same question 100 times in 100 different ways and new people will still show up and ask it again without even 30 seconds of research. It's not like we are selling widgets here, this is important stuff for a rare group of people. Anybody in bad shape needs to invest the time. After 17 years of owning and running forums I have found that about 50% of forum users are helpful and the other 50% wants all info handed over to them on a silver platter.
  2. xBoss


    Probably need to up the dose.
  3. xBoss

    Work and CH

    O2 never worked for me but I'm lucky in the work dept. The CH usually comes right after work when I relax.
  4. xBoss

    Describing CH to non-believers

    The word headache is the wrong word. It lumps us with the rest. Proper terminology would be something like Brain on fire syndrome then they would take us serious!
  5. xBoss

    Why can't not being in pain be a good thing?

    The PTSD is real with CH.
  6. xBoss

    Describing CH to non-believers

    Tired of people that say stuff like yeah, I get headaches too.
  7. xBoss

    CH related to tumor

    I really need a brain scan to settle it as i am self diagnosed but im on year 21 or so and its pretty obvious at this point that i have ch. I also match everybody here for pretty much everthing. Tumors are 10 times more rare than ch
  8. xBoss


    Usually the two months before my cycle I get some shadowy symptoms. Tension headaches, sore muscles. I feel great right after the cycle ends.
  9. xBoss

    Any input

    I had a full time job when I was 25-26 that involved looking up at ceilings all night, fixing, painting, cleaning them. Big stores like Macys. Anyway, the clusters started after that time and I started out by getting my wisdom teeth pulled because I thought it was the teeth. I feel like the job messed up my neck for life and may have helped trigger the condition.
  10. Hey guys, After 20+ years of fun times with CH I have developed some pain mgmt tricks that help me cope with the immense pain. Thought I would share. Burning hot showers to the neck. Tapping or hitting nerves in the neck. Contorting neck to the left (Left side pain) and laying on my face with tons of weight pressing into the bed or hardwood floors because they are nice and cool. Yawning. you can get good at triggering yawns if you try, they stretch neck muscles nicely. Running around the house cursing like a sailor and crying like a baby. (Lol) How about you guys?
  11. Hey guys, 20+ year sufferer here, the last few years i have been sweating super hard like shock sweat which sucks because now i have to deal with being wet and freezing while i have a ch Just trying to gear up for the next cycle, i may have them busted though!
  12. xBoss

    does your pain start from the back of your eye?

    Exactly! I meant to say neck, jaw, eye. The crunch is always in the neck for me. I even call it the crunch lol.
  13. xBoss

    Dreams and clusters

    If you sleep well then you usually don't remember dreaming. If you don't sleep well you wake up or almost wake up while dreaming and remember it. The best dreams I ever had was sleeping on a boat in the ocean with big waves making the boat rise and fall, I guess it is common to dream hard at sea in the waves due to the stimulus keeping your brain in the "remember" loop better.
  14. xBoss

    CH triggers

    I suffer from lots of muscle tension year round. I feel like certain positions trigger tension headaches that trigger ch. Not sure but it was the first thing i figured out 21 years ago. When i sit for an extended period in a kinda leaning back position the ch sets right in. All chemical scents that are not organic smell like poison these days. They make my lips buzz and you can taste them. Def developed hyoer sensitivity since ch
  15. xBoss

    CH triggers

    Burning smells (frying, oil cooking off from an oven is huge) chocolate (does happen) cigarette (sometimes) Alcohol (Every time) certain sitting positions on couch (common) falling asleep (nightmare on elm street scenario. Gotta love those 7 cluster nights) Anything with heavy chemical scent (I hate perfume!) Dehydration (I think it's tied in for sure)
  16. Glad to hear that it's common. I never did until a couple years ago. I also suffer from bad internal heat regulation and I get cold seizures if I get cold and wet. Tx guys!
  17. xBoss

    does your pain start from the back of your eye?

    My ch starts in the rear left teeth then the eye. There is nothing for the eye doc to fix, its a ch side effect.
  18. xBoss

    If Oxygen and triptans work is it 100% CH?

    There are many levels to CH pain, I usually get off easy in the early stage of a cycle then it tops out.
  19. xBoss

    Computer help....

    I used to build websites. Had to pretty much retire due to the eye pain and triggers. Breaks def. help.
  20. I did not want to start a whole new thread so I'll mention here since it was funky. The most painful CH I ever has was Summer 2017 and during that moment I heard dancing queen playing in my head perfectly clear like I was playing it. The funny thing is that I heard all the lyrics play and I don't know them. Brain was accessing old memories or something.
  21. xBoss

    'Symptoms' Only - No Pain?

    I never say beast or demon but years ago before I knew anything about them I would say it's what burning in hell must be like. Good luck Claudia!
  22. xBoss

    Doctor vs Patient

    Busting is stopping a cluster cycle and being pain free! We do that here! I may seem new but I'm a long time lurker.
  23. xBoss

    Doctor vs Patient

    Doctors can suck sometimes. I'm actually self diagnosed. I went through the first 8 years thinking I had either migraines or something wrong with my teeth since I started having CH around the time my wisdom teeth came in. Doctors were of little help. I'm on year 21 now so there is no way it's a tumor or anything like that or I would not be around to post this. Once the internet had enough CH info out there about 12 years ago I finally figured it out because I have the exact symptoms as any of us here.
  24. Funny you say that moxie because I always read about how CH makes it so you cannot sit still but I like to press my head into the bed or floor and sit very still in the dark and I also used the term hide from the pain by trying to get into portions of my head that kinda hide from it. Yeah, the self inflicted pain stuff, hitting, stabbing etc. is pretty normal IMO. We gotta do what we gotta do!
  25. Heh, i forgot the orajel. I gotta try the push ups. I had to quit the monsters, love them but my health cant handle them very well anymore. I know what u mean chels