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Posts posted by xBoss

  1. 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.

  2. On 3/29/2019 at 2:56 PM, doctorssuck said:

    Mine starts in the neck and then move to the jaw and teeth before attacking the right eye. 


    Exactly! I meant to say neck, jaw, eye. 

    On 3/29/2019 at 5:47 AM, Siegfried said:

    Hi John,

    Always behind right eye for me but more on the upper side between the eyebrow and the eye. Some kind of crunching tension

    However if it stays there it will most likely only be a shadow that can stay there for hours and hours. The real attack comes with fullness in the ear. Once I start to feel pressure in my right ear and become glowingly hot, I know its time ...

    Why do you think you do not have CH ? Is there anything in your symptoms that go against it ?

    Best Regards !


    The crunch is always in the neck for me. I even call it the crunch lol.

  3. 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.

  4. 3 hours ago, Boatman said:

    X boss I couldn't agree more. I hate purfume!!. Candles and car freshners!!  The couch sitting positions too.

    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

  5. 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)




  6. 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.

  7. 1 hour ago, Claudia09 said:

    Hi everyone! New here - what is 'monster' ? "Beating them with 'monster' "- i've seen it a couple of times. Also what is busting? Need some help with the terminology : ) Thank you! 



    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.

  8. 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.

  9. 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!

  10. On 2/26/2019 at 10:35 PM, mark m said:

    Oh ok well I can't even try that stuff if I wanted to because I am a disabled veteran and the VA does random drug testing for people on bp meds or pain meds. But Thank you for the reply. I am still using oxygen and just started using 15 psi because of reading this forum and it helps now but the VA does not give me the non rebreather masks so i ordered one from another site for clusters. Thanks for replying, Mark

    Standard drug tests do not look for mushrooms. I never heard of anybody failing a drug test over mushrooms. They saved my life last year.

  11. 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?




  12. I had the same revelation. I only suffer once a year for 3-12 weeks because I smoke weed all year. However, smoking weed during the cycle sucks as you stated, makes it worse.


    Last year I stopped the cycle with mushrooms, I hope to do it again this year.

  13. On 2/14/2019 at 7:44 PM, jon019 said:

    ….it won't kill you...no matter how many times you wish it would....

    I used to think that but after about 21 years of them and im nearing 50 i think they can. 

    I now go onto shock and sweat bullets then i get a wet freeze that gives me a cold seizure.

    So although they cant kill you all by themselves, they can trigger other things and stress the heck out of any other weakness you may have.


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