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Posts posted by weatherman

  1. It was another amazing Conference.  Inspiration levels are again boosted to the ceiling.


    I'd have to take away an incredible chat with "Batch", to get me going on the D3 and extra push on the exhaling techniques for O2.  Mixing-up preventatives also seems like a great way to go.


    Can't wait to see what my doctor has to say now! 



  2. We will be attending.  I have two questions ..........


    1)  Is there a "Group Code" to use when reserving the hotel rooms?  Should I call the hotel and hope they know about Clusterbusters?


    2)  Will O2 be available to store (and use) in our rooms, just during the conference?  I know O2 has been provided in the past at the conference room site, for use while the lectures/presentations are taking place.  There is typically O2 available (at off-hours) in someones room also.

    I typically get hit in the middle of the night and having it close by would sure be nice.  My O2 provider at home (Apria) will deliver tanks to the conference, but now they charge a significant price.


    Can't wait to see all of you headbangers again !!!!



  3. didgens,


    Sorry to hear about discovering "barometric pressure changes" are such a trigger for your son.  Most of our triggers are avoidable;  alcohol, certain foods, sleep patterns, etc, but there's no escaping Mom Nature.  Since moving or using a pressure chamber are impossible ideas, how about trying to record and track exactly how much of a pressure change is responsible for the setting-off a CH attack?


    A highly accurate marine-grade barometer could not only give you the atmospheric pressure, but chart the history and have alarms that you could personalize for CH thresholds.  Most of them are rather pricey, but there are ones that would function for your purpose for under $100.


    You could get the forecast pressure changes from many sources, using their weather maps for your location.  Once you've determined the critical decrease in pressure necessary to instigate a CH attack ..... at least you'd be warned.


    I live in the San Francisco Bay area and a 8-10 mb drop in pressure over less than 4 hours will get me screaming most of the time.  When Low pressure approaches I get the cold water, O2 and coffee ready.  Sometimes getting ahead of the attack provides relief and sometimes the attacks never occur. 


    Best of luck.  Mountain travel and airline flights are magnitudes greater in pressure changes over time.


    weatherman B)

  4. jms,


    Firstly, let me congratulate you for being a supporter.  You are NOT a broken record and are NOT alone.  Many CH sufferers have lost relationships because spouses and/or family members do not understand, cope well or take the time to learn how agonizing this condition is.  It takes a very strong person to watch another suffer these attacks .... I can't watch it myself and certainly can't imagine seeing it happen to a loved one.  Just having someone to care is HUGE in assisting your son deal with his predicament.  We can all relate to the benefits of nurturing family, and tell awful stories of the ones who don't.


    What will it take to find a cure?  That's the $64 question.  It boils down to money and awareness.  CH is a rather rare and misdiagnosed affliction and those of us who have it will hide from public view, as the outcome from enduring "these suicide headaches" is not pretty.  Western medicine (and most of it's Doctors) do not understand the nature of CH, so its causes, cures and treatment range from bizarre to mundane.  There are countless afflictions that compete for medical exploration .... someday, a really rich and famous doctor will encounter CH, dedicate his life to a cure, then this will all be ancient news.


    This group (Clusterbusters);  created and lead by our biggest hero Bob Wold, was formed to integrate information on treatment from actual sufferers that modern medicine has avoided.  Big Pharma is profit-driven and there are just not enough of us to justify the expense of research and manufacturing drugs.  Big Medicine is not really interested either.  More Clusterheads have found relief (myself included) by the knowledge gained from this group than many other standard treatments with drugs, etc.


    Several things you can easily do.  First, get your son to try any and/or all of the methods that have actually worked.  CHfather's advice above is spot on good stuff.  Try anything and if it doesn't work, try something else.  Keep at it and surely your son will get some relief.  Abortives such as oxygen for a current attack work excellent, and should be easily obtained .... and there's NO side effects!  Busting is best for controlling the intensity and duration of a cycle, if he's Episodic.  Chronics like me bust regularly several times a year.


    Second:  Support Tyler Mann's documentary film, now in the creation progress.  Support the Clusterbusters in awareness.  Attend a Conference if possible ... it's AMAZING.  You will be acknowledged and gain so much information.  Our members use "Citizen Science" to experiment with treatments, then pass along the results, often with tremendous benefits to sufferers.


    We are currently our biggest advocate, but that is hopefully changing.  Momentum is gathering on research for treatments.  Awareness is increasing and more famous people are coming forward with this condition.  Progress is glacially slow on concrete developments .... that's why we need each other.


    Give your son a hug, oxygen bottles and keep asking questions.  There is relief.

    Wishing him Pain Free Days.....


    weatherman B)

    • Like 1
  5. Hey DH,


    Any idea what started your cycle in December?  I'm at the "trying to figure out new cycles" thing too, and have not come up with any solutions.  Just the nature of the Beast, I guess.

    Also, what type of Triptans were you taking.  There's some new one's that are giving may success (thinking 5-MeO-Dalt).

    Good luck with the current situation.  Many of us also get the autonomic symptoms without pain.  It's kinda bizzare, but sure beats the crap outta the usual painful outcomes.



    • Like 1
  6. Hi Pete,


    What's currently working best for me.....


    Using a mouth tube (instead of mask) set at 15 lpm.

    Alternate deep breaths as the bag competely fills with gulps of ice water.


    I also try to exhale completely and hold the O2 in for a bit.



    • Like 1
  7. DDD,

    Send it to California.  We're starting mandatory 30% rationing next week with a boat-load of restrictions on top of that.  I'll trade my bucket in the shower for a full lake any time.


    That's because PNAC can't adjust their agenda outside of manipulating foreign policy.  We'd have "War on Water" broadcast by media and politicians if there was any money in it.  Gotta agree though, a pipeline would work.  And if it leaked......

    At least the dry weather is keeping my CH at bay!!!  YAYE !!!

    weatherman  8-)

  8. Hey ToniEvo,

    Yup, same thing happened to me with the Verapamil.  I quit that drug and was prescribed Lithium after that.  WHOA, welcome to the "Land of Side Effects".  Quit that stuff immediately!  Thanks Doc!

    Imitrex at 3mg doses has worked very well in the 3-4 times I've tried it.  None of that unwanted baggage at all.  Pain gone in 5-8 minutes too.  Really hated the sensation of hot chemicals scampering through your blood stream with the 6 mg shots.  It's got to feel like Chemo Therapy, you just get the overall aura of something really nasty and hot overtaking your gut.

    I adapted the standard injector to give the 3 mg dose, using spacers to limit the travel of the plunger.  It was pretty easy and wished I'd taken photos of the construction.  Will disassemble (more like cut up) another injector soon and document the process, then share it here.

    Never had to take the second 3 mg dose.  Good luck and PF days/nights...

    weatherman  8-)

  9. Moxie,

    Wonderful bit of prose there.  You really grab the essence of the CH experience.  It's actually scary to read .... just as it should be.

    I kinda like the first draft too.  Will definitely share this one.

    weatherman  8-)

  10. Always liked Accuweather's migraine headache maps.  What info do they use for that graphic ...... and is it really useful to migraine headache sufferers?

    Lots of forecast goods for migraine people.  A favorite is the Migraine Monologues...


    Phone Aps, Alerts and lots of other products to attempt prediction for these headaches.  If they work for you .... GREAT, but I doubt their practicality.

    I'm still a big fan of the idea that there are primary and secondary triggers, and that usually more than one has to occur to provoke a headache.

    weatherman  8-)

  11. didgens...

    Yup, that afternoon nap (always on a day off) is a trigger, except it was the K7-8 that woke me up.  I could never wake it in time to abort with O2 quickly.

    It is weird that occasionally the onset of CH is very slow.  I can stop it with cold water chugging or activity.  Especially with a difficult conscious exercise, like solving a problem or increasing mental liveliness with stress.  CH is so mysterious.

    Heat wave in Calif?  Yessiree, it's coming.  10-15 deg F warmer than today.  Dry offshore flow too, and that means the allergies will be ramping up also.

    Carry O2 in the car, no naps .... most of all wish him good luck!

    weatherman  8-)

  12. spiny,

    The connection between dreaming and CH should be THOROUGHLY studied.

    Good information (although listed as purely hypothetical and based on conjecture) is this article;


    I started vivid dreaming at the onset of CH, about 5 years ago.  The memory and intensity of "the dream experience" seemed to become more noticeable and increase as CH became part of me.

    Right handed

    Left side CH, chronic with no head injuries

    No probable connection for me between dreams and onset of "high" cycle times.

    THMH .... WHOA! That Larium has the most wicked list of psychiatric, gastrointestinal, cardiovascular, hematologic, dermatologic and nervous system side-effects I have ever seen.  I can't imaging what that experience was like?

    weatherman  8-)

  13. Hey didgens .....

    As usual, another great topic that's got me further wondering, as I am also barometrically challenged.  Pressure drops are definitely a trigger for a lot of us, with flying, mountain traveling and storms passing that bring on the pain.

    I get shadows while driving, and that's a really small drop in pressure.  Head to the hills or take off in an airplane almost guarantees the Beast will visit.

    I wonder, since heat can also be a trigger for me (very warm days and sometimes with too many covers on the bed at night), I can quickly get some comfort by stepping outside or drinking cold water.  Too bad we can't easily alter the surrounding air pressure to test the potential for help.  Can just imagine stepping into a barometric chamber and cranking up the millibars as easy as grabbing the O2 and huffing for awhile.  This needs to be tested.

    I've attempted to correlate atmospheric pressure drops with CH, as the resources are readily available to me for that data.  Have found that the rapid drops (>2 millibar per 3 hour period) have a 60% chance for triggering CH.  This is complicated by a lag time of 15-75 minutes after the greatest drop and the low pressure has been maintained.

    There are weather websites, like Intellicast, that attempt to predict the areas where weather is likely to cause aches and pains.


    They even have a Bad Hair Day forecast.  God knows what parameters they use to determine the likelihood of encountering your particular problem, but they may be on to something.  The pressure changes seem to be a secondary trigger that can easily push the primary triggers envelope into the CH range.

    Knowing the chances for arrival of a barometric changing situation is as simple as looking at the weather map or wondering how many 1000's of feet you'll be climbing in the mountains.  Avoiding this position can be impossible and guess we just have to take whatever comes our way, Imitrex in hand.

    We should all move to the Tropics, have luxurious homes on some beach and build an O2 producing machine.  Hmmm .... gets me thinkin.

    weatherman  8-)

  14. Hey ssibjp,

    Totally agree with CHS ..... if it works, put it in your arsenal and rejoice.  Odds are whatever aborts the headache now will not be as effective sometime in the future.  It helps to have back-ups and keep them handy.

    I've also tried the Ausanil and regrettably didn't have the same luck.  Sure it burned (I was ready for that, I'm a chili head) but there was no effect on the CH.  I'm a 6 year Chronic who gets relief with traditional (HA! ..... thinking MM is traditional) busting and use of high-flow O2 to abort the small stuff.

    I also got the Ausanil sample at Septembers Conference and tried at first notice of CH coming on, and twice after K5-6 had been reached.  Reminded me of the time I ate a whole Bhut Jolokia to battle the Beast.  Thinking fire vs. Fire ...... Whoa ...... it was pain added to more pain.  Kinda like stubbing your toe, then bashing a finger to divert/confuse the nerves.  Felt kinda moronic for trying that one.

    Honestly, I was really hoping for results.  At least the use of a familiar acting product to get some comfort would have been nice.  Oh well, not the first thing tried that didn't have beneficial results. 

    Hang on to the Ausanil, it may be your Holy Grail for relief.  I'll send you mine too.

    Hope the pain-free days continue forever .......

    weatherman  8-)

  15. Yup, that's me exactly.  The mind is terminally in a state of action.

    Always moving, constantly searching for new information and answers.  I tackle new subjects and projects at a steady pace.

    When the workbench is clear, I feel lost. 

    I have lists to tell me where my lists are.

    Just the tracking of CH has already filled one notebook (charts and graphs too).

    Busy brain is a happy brain, same for the hands too.

    weatherman  8-)

  16. I had never encountered allergies, and had VERY few headaches, in my life before I turned 50.  Only used antihistamines once (in my 20's) and owned a small bottle of Extra Strength Tylenol for over 25 years (hangovers, etc).

    Then the allergies started.  No life changes at all.  At first during Spring and Fall, then increasing to year-round within 3 years.   The symptoms ramped up with over-the-counter meds barely working.  I went for allergy testing and after three rounds of shots, interviews, questionnaires, and multiple MD visits, nothing was found.  Sinus headaches progressively got worse.

    I told my Dr on the last visit that I could handle the sneezing, stuffed-up nose, itchy eyes, etc ..... but the headaches were kickin' my butt.  She asked me a few questions (of course I answered yes to all of them) and told me about CH, then sent me for a CAT scan. 

    Five years later the CH and allergies are minimal but persistent.  O2, MM and Zyrtec are saviors.  No doubt a connection for me somewhere along these lines.

    Did my ganglion/nerves get re-positioned?  If that's the case, it sure makes sense.

    weatherman  8-)

  17. I have found that Moxie's recommendation for massage techniques do work for me.  Especially the "thumbs on the bridge of the nose" tactic.

    Moxie's post (from nearly a year ago) says in part .....

    Pressure Points

    1. Place your thumbs on either side of the bridge of your nose at the base where it joins your forehead.

    2. Squeeze the bridge of your nose by pushing your thumbs towards each other. Apply firm pressure. Hold for ten seconds release and repeat x5.

    Keep your thumbs in the same place on but rotate so the pads of your thumbs face up towards your forehead. Press upwards with your thumbs, hold for 10 seconds, release and repeat 5 times.

    I don't know how or why but it sure works well when using O2.

    I signed up for professional massages (Massage Envy) after reading Moxie's suggestions, hoping for further help in conquering CH.   They offered Cranial Sacral Therapy and wanted to try that too.  Neither worked for me .. bummer.

    Thankfully, standard massage has never triggered an attack. 

    weatherman 8-)


  18. Sergical81 ...

    Gotta say the same ..."That's Great News"   ;D

    I hope to follow in your footsteps.  I also dose w/MM every two months and have been mostly pain-free this year.  Indeed, the CH group got me where I am and I owe all these people for getting my like back.  Occasional O2 with the nearest thing to a shadow, nothing more than a few K4's since January. 

    What quantity of MM do you use and how many "busts" do you do.  I bust three times (5-6 days apart) and use 3g each time (dried and whole).  Next time around I think I'll lower the dose.  Funny, I've farmed MM too and also keep them with my meds.

    Never has PTSD, just too goofy I guess  :D

    Lets hope for continued success.  Must enjoy it while we got it.

    weatherman  8-)

  19. Hi Melody ...

    One things for sure, there are no concrete rules for the occurrence/severity, or our attempts at treatment of CH.  There are slightly different methods that work for each of us.  You just have to experiment.  Don't worry, when you find the perfect remedy, CH will attack from another angle.  Keep trying!  The consensus found on this board is a VERY good place to start.  You just might need to "tweak it" slightly.

    I'm also chronic (6 yrs) and have had great luck with busting recently.  This came after a year of investigating doses/timing of busts and just what my triggers and patterns were.  Keep a log.  Nothing higher than a K5 this year, it must work.

    I now bust every 2-3 months with good results.  Start busting as soon as the Beast makes his presence known (sooner the better), otherwise stick to a schedule. 

    I use about 3g cracker-dried home grown per dose.  Dehydrate after growing, then store in freezer.  If you are drying, crushing and encapsulating --- the desiccant is a great idea.  Moisture is the enemy here.  So is heat.

    First dose is usually 4g, five days later 3g, then another five days later 2g.  I stick to the 5-day period closely and use no blocking prescriptions.  Take as much as can be tolerated the first bust.  Kick that Beast initially right between the eyes, then try decreasing the dose.  I've never tried the tea .... maybe I should.

    Sounds like you've got great methods and pretty good results.  Don't stop now!

    Best of luck and PF days .....

    weatherman  8-)

  20. Hurtinhead,

    Glad to see you've made your way to ClusterBusters.  ;)

    Sorry you had to make that search.  Help is on the way.

    SHEESH!.....23 years and no Oxygen!  The amount of unnecessary suffering that some of us poor clusterheads go through is amazing.  This site lead me to Oxygen 5 years ago and I'll never be without it.  Home, work, car ...... I'd marry that darn tank-o-gas if it wore a skirt.

    Please get set-up with the right mask (Optimask) and a dependable supply.  The advice you'll receive from CHfather is absolutely crucial and accurate.  O2 is a miracle that cannot be ignored.

    Energy Drinks work wonders for some.  I go for cold water and cold air if available.  Alternate gulps of ice water with the O2.  Cheap, easy and no side-effects .... can't beat that!

    Save the Triptans (Imitrex Injections) for last resort.  Lower doses than what are available by prescription work for many of us.  Lots of advice on every subject you can think of ... and it's all good.  Fire away with all the questions you have.

    Pain-free days to you

    weatherman  8-)

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