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Everything posted by clustermom13

  1. clustermom13

    Another simple "cure"

    I think this is your reply, I clicked on the link you posted previously in this thread and here it is, nice work! Maybe they weren't as successful as they thought at deleting it, haha. "On a recent show, the doctors talked about “alarm clock headaches,” which they also described as cluster headaches. I’ll bet every time you cover any topic, someone claims that you have understated its severity and misstated its treatment . . . but I can’t imagine a more inappropriate treatment of cluster headaches than that show provided. Maybe there is such as thing as “alarm clock headaches” that is different from cluster headaches, and maybe the simple suggestions on the show will work for those alarm clock headaches. But cluster headaches are practically universally agreed to be the worst pain that a human can experience (see wikipedia, if nothing else), and they are not brought on by talking on the phone too late, worrying about the grating alarm clock noise, or by stress, or by any of the things the show suggested—and they are far, far from being treatable by those means. Here’s the thing: the AVERAGE TIME between the first doctor visit and a cluster headache diagnosis is SEVEN YEARS. Doctors don’t understand this relatively rare affliction, and as a result many sufferers have no idea what they have. They get teeth removed; they get treated, ineffectually, for sinus headaches or tension headaches or migraines; they suffer agonizingly and their suffering is discounted not just by physicians but by their friends and, often, their loved ones. To minimize cluster headaches as you did, and to suggest simplistic “treatments” for them, is to perpetuate the misdiagnosis, the agony, and the stigmatization. You could make such a difference if you treated this topic appropriately! Lots of people would be happy to help you." GIVE 'EM HELL!!
  2. clustermom13

    Dating and CH

    THMH, Now that I have met you in person, I can say that you are a handsome fella and a very nice person to boot! Any woman who would let clusters get in the way isn't worth your trouble. Enjoy life, one day it'll surprise you :-* (on the cheek, of course.)
  3. clustermom13

    2012 Conference chatter

    I can attest to that photo! Spittin' image
  4. clustermom13


    Whooligun, Is the first MRI you have ever had in the 20 years?
  5. clustermom13

    the beast is back

    Jerry! I thought you were lost Nice to see you're still here. XO
  6. clustermom13

    Wonderful moments at crossroad

    I am proud to be counted among your friends
  7. clustermom13

    Out of the closet

    SAAAAADDDDD face :'( Was looking forward to meeting my other "parent in crime"!
  8. clustermom13


    Today marks a very special day for all of us here at Clusterbusters. Mr. Bob Wold entered the world on this day (just a few years ago!) to give selflessly to help others. Many would not be here today if it weren't for his generosity and committment. Thank you, Uncle Bob, and HAPPY BIRTHDAY!!! I hope all you give comes back to you 100 fold today and EVERY day XOXOXOXOXOXOXOXOXO
  9. clustermom13

    Hipshot the movie star

    My DirecTV said 9:00 in MI. It is TIVO'ed!
  10. clustermom13


    I see your posts Ron, but wondering how things went with Goadsby?
  11. clustermom13

    Reform Conference

    Many "Thank You's" to you both!
  12. clustermom13

    NMDA receptor antagonists

    Well don't forget to order the cardridges I did these with my sister in college. We had fun, a bit of a head rush, but wears off pretty quickly. Made us giggle.
  13. clustermom13

    To my second family on busters

    Well, I would just like to say congratulations to you on the beginning of the rest of your life. Make it good, do what makes you happy! Who knows, maybe somebody will come along the same road you're on, and join you. Maybe not. Either way, you'll have a cool car, a loyal dog and an awesome tattoo!!
  14. clustermom13

    chronic paroxysmal hemicrania ??

    Isn't that a bit of an oxymoron? But seriously, if it is CPH it will likely respond to indomethacin.
  15. clustermom13

    National Geographic Special???

    I'm sure it will be all the "buzz" on here when the time comes.
  16. clustermom13


    Happy Birthday, Dan! (sorry I am a day late )
  17. clustermom13

    new files

    BRAVO!!!! [smiley=2vrolijk_08.gif]
  18. clustermom13

    new here, and have a few questions

    I wouldn't eat for 2 hours before, or 2 after, just to be safe. I think that fat containing foods absorb some of the medicine and you don't get it all.
  19. clustermom13

    new here, and have a few questions

    I had to drop Apria because their billing department is in Bum-fecked-some-other-country, and they are all idiots that read from a script. Beware! My advice is to find someone in the local office that will be willing to speak with you if there are any billing issues. I think that if you are connected to BFSOC (above) you can request to speak with a supervisor in the US and they are obligated to transfer you. I'm glad that you got a good 02 setup, and I hope your experience is better than mine was.
  20. clustermom13

    The need for a laugh thread

    I have seen those, and they are HILARIOUS!!
  21. clustermom13

    *BUSTING INSTRUCTIONS* and info for Newcomers

    I got your back
  22. clustermom13


    Man! Crappy luck. Glad you found out before too long. Still thinking of you both, and wishing you the best. XOXO
  23. clustermom13

    Airplane advice?

    Airline flight hits appear to be random here. No particular length of flight or height of flying seems to matter. Andrew's chronic behavior doesn't improve or worsen during or after flying.
  24. clustermom13

    *BUSTING INSTRUCTIONS* and info for Newcomers

    BG, PF Tek is better than mycobags. My bags yielded next to nothing, and all that time invested . . . . .
  25. clustermom13

    21yrs+ hospital information & status update help

    I don't know if this will make you feel any better, but what you and your hubby are going through is pretty typical of a CH patient. Numerous hospitalizations, medications, side effects and occasional relief that gives them hope, only to find out that it was temporary but unsuccessful in treating their CH. We all know his frustration and fear of detox. My 19 year old son has been chronic for the last 7 years, and we struggled with that fear for a long time. Now that he looks back on it, he wishes he had done it sooner. Before busting, he was rebounding bad from Toradol injections that had him up to 10 - 14 headaches per day. And I won't lie, the detox was tough, but not that much tougher than living with the rebounds. And not only did the detox pave the way for busting, it almost immediately (following the first 48 hours or so) lessened the CH hits. To this day he is still not PF, but so much better. Not to mention how he felt with all that crap in his body from conventional meds. He once said that he really had no idea how he really felt until after the detox. If we had it to do all over again, knowing what we do now. I would've only seen a headache doctor for diagnosis and oxygen. So much needless suffering. And the sad thing is there just isn't really anything they can give to treat CH. It is just a guessing game since there is no drug made to treat CH specifically (yet). I hope he reconsiders. What I would fear is the induction of all these new meds actually making him worse instead of better. It is harder to undo later. You are a good wife for supporting him like you do. Many have turned their backs on suffering spouses. You are out there getting info and helping him in so many ways, you don't even know. Regardless of what he decides, he has a cheering section out here!