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(Message started by: Miguel on Feb 18th, 2002, 11:07am)

Title: Progress Report
Post by Miguel on Feb 18th, 2002, 11:07am
It has been quite a while since I visited the board.  I see lots of new people, as well as a totally new board.  I guess like many that somehow manage to stop the pain, one puts this things in the mental file...

Background - I am episodic, since I was 21 y-o, with attacks two to three times per year.  The attacks lasted about 6-12 weeks.  The only thing that I found worked to lessen the impact of the attacks was 4 advils and 1 actifed, taken daily, with tons of black coffee.  I hate prescription Rx.  This is probably because I worked as a biologist in Rx research and development for about 14 years with emphasis on cardiovascular research.

As of taday, February 18th, 2001, I have been pain-free, and without medications of any kind for 10 months.  For the two episodes prio to that, and including that last episode, the duration was rather short, 2 weeks at best.  Although, it seemed as if the pain had "mutated" to hellacious levels of intensity for a few days within those episodes.  Also, the side-switching, alternating sides from episode to episode took place, yet the last couple of episodes showed bilateral attacks!  Weird!

What did I do to lessen the frequency?  I noted all foods that triggered my attacks.  I systematically and religiously took them out of my diet during episodes.  Also, I curtailed consumption of those in between episodes.  I think that the lactose depletion has helped most.  I reduced, if not completely discontinued any dairy products.  I did not like fat-free milk anyway.  I still indulge in cheese consumption, but sporadically.  Also, I completely avoid any msg-containing foods.  I consume alcohol in between episodes, but none during episodes.  I reduced my total fat intake significantly.  I have pigged-out on chocolate every now and then, except...no pain.  Also, I try not to consume any sugar whatsoever, except for those moments of weakness when I hit the chocolate bar.  Activity-wise, I am adicted to windsurfing.  I started about 1.5 yrs ago.  The adrenaline drain of this sport is mayor.  The only episodes I have experienced since I started this sport came during times when winds were not cooperating, with long periods of no exercise, in excess of 6 weeks.  As the experience sets in, the conditions are more challenging and the workout is more intense.  Where I am not advocating for anyone to take up windsurfing, perhaps considering some form of extreme sport.  One that get your heart going not just from the workout, but from the fear factor, something truly exilariating, may help some.  It definetly improves disposition and mood, along with shape and physical condition.  Further, I have worked to decrease my level of emotional stress, and take things more optimistically, or in a less self-challeging form (i.e.:  fuck it!  or fuck 'em...works wonders...).  I think mood contributes to CH in some form.  Some data suggests a correlation between depresion and CH via mechanism of action, i.e.: suicidal tendencies in the worse cases.

My true test will come during the one year anniversary mark sometime in April.  I have never missed that episode for as long as I can remember having this syndrome.  I hope that it doesn't come, or that if does, there is plenty of wind to vent frustration.

Pain-free Days to all  ;)

Title: Commentary on Progress Report
Post by Katherine on Feb 18th, 2002, 1:14pm
Hi Miguel,

Glad you found something that works for you.  I hope and pray that it keeps working.

I too do not eat sweets.  I am on the Atkins diet which does not allow me to eat sugar of any kind or carbs that eventually break down into sugars like bread, pasta or corn.

I am also alcohol free during my ch cycle for the same reason: ouchies.

I also participate in a very active adrenyline producing sport: Medieval swordfighting.  40 lbs of armor, a pole arm and lots of running away from people who are trying to kill you, or running towards people who you are trying to kill depending on how the battle is going.  I also do belly dancing, but that is not as intense, at least from an adrenyline stand-point.  More aerobic though.

None of these things have made my cycle go away or even lessen.  I think that increased activity and limited diet has been good for my over all heath, but it has done squat for my CHs.  In fact, the time period between clusters has actually decreased by three months (not a happy thought).

Title: Re: Progress Report
Post by Miguel on Feb 19th, 2002, 8:18pm
Hi Xena:

I am sorry to hear about your episodes becoming more frequent.  Where you seem to engage in extrenuous physical activity on regular basis, it may not be sufficient for the "true fear of death" factor since perhaps it is routinary at this point.  Where I am not advocating that such factor is the be all end all of CH, it works for me.  I have been lucky enough to corroborate such with others as well.  The interesting aspects of CH is that it seems to have so many variants, almost as many as sufferers.  There will always be many that do not experience relief from what seems to help others.  Such is a given with CH.  

I think that there is a "disposition" factor that contributes to CH given the parallelisms that I found between the somewhat known mechanism of action of CH and other CNS-focused ailments.  I would recommend skydiving....without a parachute....LOL!!!!  Just Kidding!!!!  K?  Now, I had a friend that took up skydiving as entertainment.  She suffered CH as well.  She noted that because of the cost involved in such hobby, the practice of such was somewhat sporadic.  Interestingly enough, she noted that her CH attacks were significantly shortened, or even stopped on their trax sometimes after jumping.  The rush is apparently rather intense, particularly for those that do not indulge so often.

Now, if that fails, have you tried shrooms or lsd?

Good luck! :)



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