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littlecush

5 year cycle

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Hi, I am new to the community and have CH's on the 5-year cycle and just finished a cycle and felt very alone while going through it. No one seemed to understand how much pain I was in and how the CH's impacted my daily functioning ( I get 10-15 a day for 45 minutes with most coming from 3 pm on and waking me up a night and cycle last about 12 weeks) and I just wanted to reach out to others who have been through the same thing to see how they respond to those who do not understand. I was also wondering how others balance the demands of full-time work when in so much pain because I struggled to be productive, to say the least. Thanks in advance for any suggestions and comments!

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Hi littlecush...welcome...sorry you gotta be here...but tis the RIGHT place!

For many years I was DESPERATE to "explain" to non clusterheads what it was like. Even best of friends, coworkers and family members would roll their eyes and "yup" me. There is even a marvelous letter penned by Simon explaining what the ailment is...quite thorough and touching...and I even gave up giving that to folks....it just didn't register. The ONLY person...other than other clusterheads and ONE neurologist..... who ever got it..... was a coworker who had a friend with CH he used to drive to the ER. Anymore I just don't give a damn....got more important things to concentrate on....nobody hears nothing but positive from me. Getting hit is a bitch....in between hits? life is wonderful. Mind game I guess............

Re work...I get it...used to worry obsessively about how I "appeared". This kind of depends on the type of work and the kind of folks you work with and their regard...or not.... for you...beyond your "ailment" ... YMMV. I just worked my ass off in between hits or inability to function: accepted extra work, extra hrs, extra responsibility, extra anything.  I know this sounds glib....and it is the hardest thing to do and NOT always possible....but I figured I had no choice. Additionally, the stress of work was a preventative...until I got home...THEN got BLASTED.....

What made the above...and life in general POSSIBLE was OXYGEN!!!!!! I carried an e-tank with me everywhere I went...with a clustermask purchased at ch.com (my favorite possession). I hit that baby with an energy drink appetizer at first sign of hit.....and back to work. I sure hope you got access to O2 ...and with proper technique you will be transformed....................................

Night time hits are particularly cruel...pain, sleeploss, aggravation, etc..... am quoting myself from another post below:

When episodic and in cycle I used to get BLASTED at night...8 times...once per hour..so I may have compensated by becoming a light sleeper. Anyway, I would set up my O2 buddy right next to me...turn the dial to 0 and crank the valve open. The instant I was awakened I would slam the mask on (non rebreather purchased from ch.com...my FAVORITE possession!) and turn the dial up all the way (easier than trying to find the valve handle and fumbling in the dark). For some reason...also I know not why...these hits were more subject to successful O2 abort than day time hits (perhaps learning to wake before the hit got too bad, dunno).....5 mins or so and I could go back to sleep.

Ya gotta work the mental aspect too. YMMV...this is what worked for me:

Early on I used to get all agitated... screaming, thrashing, cursing, pacing, sweating, ADRENALINE by the bucket full. Learned the HARD way this was getting me NOWHERE...for any hit at ANY time...life got a whole better after I figured that out.

Next I realized besides remaining calm I needed to remain "not fully awake" which allowed me to go back to sleep nearly immediately. Left the lights off, kept my eyes closed, stayed on the edge of the bed with minimal movement, and most importantly concentrated on BREATHING only...no thoughts of anything else....'breath in-breath out" rinse and repeat....

Finally....the next morning...on the way to work....rather than cursing the bad luck of constantly interrupted sleep....I rejoiced that "HEY...I got 6 hours last night" (which was WAY better than before)......it got to be a game that me and the beast played. Attitude...it's all in the attitude... CH as well as life................

Best

Jon

 

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Hi Littlecush, welcome, and yes, I am sorry you need to be here.

we all feel your frustration regarding trying to explain to people... there's just no way to communicate the level of pain, and even the most well-meaning supporter can't grasp it.  My best friends will often say things like "how's the head?" And I know they mean well, but such a casual comment comes across as totally inadequate for what we go through.  

Jon has awesome advice above for oxygen.  I would also add: have you researched Busting and the Vitamin D regimen?  Many people here have experienced long term relief with one or both.

Pain free wishes!

Edited by fella1234

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