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Posts posted by alleyoop

  1. Right handed

    Left eye CH with no switching to date

    Vivid dreaming from time to time, but no correlation that I am aware of.  If you want to have really vivid dreams, try taking Chantix, which I did at one time to quit smoking.

    A couple of head traumas prior to CCH onset.

  2. didgens,

    You are definitely an anomaly, and I love you for it. :)  Your drive to get to the root of CH, leaving no stone unturned, is commendable.

    One thing that I haven't seen you explore though is the genetic angle, maybe because it doesn't seem to apply with your son. 

    But I am not in the same boat.  I have two brothers that have been diagnosed ECH.  To me, that is a little too coincidental to ignore.  CB is working on (and close to) doing a genetic study using DNA.  I eagerly await the results from this study.


  3. An abortive that works for many on shadows and even a nagging 'regular' headache is ginger.

    Just dissolve about a teaspoon in 6 - 8 ounces of tepid water (warm enough to dissolve the powdered ginger).  I'm talking powdered ginger right out of your spice rack.  It will usually knock the headache out in 10 to 15 minutes if it works for you!

  4. I met a doctor last week that just opened some walk in clinics.  I thought I would amuse myself and ask him how they might help me if I came in with CH's.  He said "High flow O2 would be a great start".  I was pleasantly surprised.

    To me, this is just one more sign that we are getting the word out!

    Everyone here should give yourselves a pat on the back!  :)

  5. Oxygen from a cutting torch, more popularly known as welding O2 is quite safe.  I've been using it for over 10 yrs with no ill effects.  There are many, many clusterheads using welding O2 because they don't have insurance and can't afford medical O2.

  6. One of the original CB'ers who worked in D.C. retired in a little town on Lake Chapala, south of Guadalahara.  After being there for 4 wks, he went PF.  He was convinced that it had something to do with the climate.  National Geographic said that the area enjoys the second best climate in the world.  He convinced me to come down and see if it would work for me. 

    I made the trip and stayed for 4 wks.  The day before my flight back to GA, I went PF after being hammered for my entire stay.  I was astounded that it lasted for 6 mos, and my friend came to the Second Annual CB Conference in Austin, and gave a presentation titled, "Changes in Latitude, Changes in Attitude", with Buffet playing in the background.  ;D 

    Without going into detail, the CH did come back for him on several occasions, but he has been able to successfully bust each time, and go back into remission.   

    So while this is an interesting angle and maybe worth looking into further, it is no magic bullet.

  7. (.....brew and tingeling), who credit very long stretches of being pain-free or nearly pain-free to those three elements.

    And might I add they were experiencing some walloping chronic CH, which is so difficult to treat, but they're now enjoying very long remissions (just how long only time will tell).

    So IMO at least they are now solidly in the category of former chronics. 

    You can add me to that list of former chronics.

    After being initially diagnosed as Primary Chronic CH, I spent seven years in chronic CH hell.  I was diagnosed as refractory CCH, and told that the only option (at that time) was a trigeminal rhizotomy.  That's when I began researching and advocating for myself.   

    I have now been episodic for seven years, with my longest remission being 18 mos.  My current remission period is 12 mos and counting. 

    I credit the turnaround to becoming my own best advocate, and trying a number of "tactics", if you will, to finally go from chronic to episodic.  These included busting with LSA, LSD and psilocybin.  But I also took clomiphene citrate for 4 yrs, and even spent 4 weeks in southern Mexico (thanks Stu), and got my first long respite of 6 mos toward the end of that stay.

    If I had to try and nail down what worked best for me, I would have to credit busting and D-3.


  8. brs82,

    This is strictly my advice, but I have worked with a number of people in the same boat you find yourself in. 

    Both J and MG know their stuff and offer sound advice.

    Believe me when I say that the pred is your worst enemy, and you want to put it behind you at all costs.  BUT, you do have to taper off of it safely.  You risk all kinds of things including anaphylactic shock if you try to taper too quickly.

    As to the 5 day rule:  It is ideal for the reasons stated above.  But in some cases, and I think, this being one of them, you may have to try to bust after 4 days or even 3. 

    That's about all I have for now, but feel free to PM me if you want.

    All the best,


  9. @CHfather, looks like you have, as usual (thanks so much!) gone above and beyond on your research and I am sure that Echo is quite appreciative, as are we all!

    @Echo, without going into the whole question about the medical predicament that you find yourself in, let me add this:

    Why not be your own best advocate? 

    And this goes out to everyone reading this -- Don't leave your health up to someone else, professional or not!!  Thanks to this amazing thing called the "internet", no one has to.  Research and disseminate information on your own, especially when it comes to your health. 

    And I just want to take this opportunity to thank all who contribute on this board!  [smiley=thumbsup.gif]  Without the thoughtful, empathetic feedback from you all, this forum and community would not be what it is today, which is nothing short of extraordinary!

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