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Giovanni
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episodic to chronic question
« on: Apr 10th, 2008, 5:48pm » |
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I guess that I’ve officially turned the corner from episodic to chronic at this point as it has been many months (over a year) since total remission of symptoms. The difference now is the pain levels are much less and headaches are not exclusive but concentrated to night time. I consequently do not get a lot a sleep as I have numerous wakeup calls and O2 for relief. On occasions, I might have middle to upper kipper, but not often. I usually can not have any booze without triggering a headache.
My last substantial cycle was the summer of 2006, the mother of all cycles as far as I was concerned.
I’m just curious about your thoughts here on the board. Anybody else like this? Everything that I’ve tried in the past seems to have promise in the beginning and then fizzle out. I’d give $100 now for one absolut martini that wouldn’t blow my head off. 
Thanks,
John
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E-Double
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Re: episodic to chronic question
« Reply #1 on: Apr 10th, 2008, 7:38pm » |
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These days things are a lot easier or less intense than they used to be.
I'm starting to have an increase in intensity but they definitely seem to be less of the real bangers than when episodic.
I do not believe that we habituate to the pain as one may with anything else they encounter so often but I do believe that for me it became easier to cope and "cleaner" when I came off meds a couple of yrs ago.
The only real blip was last summer when I was at my breaking point moreso because I didn't sleep more than 2 hours for a couple of months = inpatient DHE set that straight.
All the best,
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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beachmusic
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Re: episodic to chronic question
« Reply #2 on: Apr 10th, 2008, 8:07pm » |
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If I could send a magic wish your way it would be to put an end to your being chronic but since I obviously cannot do that I wish I could send you an absolut martini...(shaken not stirred, two olives) that would made your head feel like heaven vs. blowing your head off!!! Have you tried leavin off the olives or perhaps that other stuff 
If worse comes to worse leavin out the vodka 
Your Pal, Mary Ann
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jon019
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Re: episodic to chronic question
« Reply #3 on: Apr 10th, 2008, 9:33pm » |
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on Apr 10th, 2008, 5:48pm, Giovanni wrote:I guess that I’ve officially turned the corner from episodic to chronic at this point as it has been many months (over a year) since total remission of symptoms. The difference now is the pain levels are much less and headaches are not exclusive but concentrated to night time. I consequently do not get a lot a sleep as I have numerous wakeup calls and O2 for relief. On occasions, I might have middle to upper kipper, but not often. I usually can not have any booze without triggering a headache.
My last substantial cycle was the summer of 2006, the mother of all cycles as far as I was concerned.
I’m just curious about your thoughts here on the board. Anybody else like this? Everything that I’ve tried in the past seems to have promise in the beginning and then fizzle out. I’d give $100 now for one absolut martini that wouldn’t blow my head off.
Thanks,
John
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From one Gio to another. That is EXACTLY my experience. Almost spooky. By my math, it has been 2 years chronic, April is my anniversary. I'm craving a beer right now!
Regards,
Jon
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Linda_Howell
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Re: episodic to chronic question
« Reply #4 on: Apr 10th, 2008, 10:02pm » |
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and John? As a chronic you will experience cycles too. Some times will be really bad and others not so bad. you might even have a week or so between hits and then only get light KIP 4 or 5's for 15 mins.
There is hope that you will once again either be episodic or they will go away entirely.
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Barry_T_Coles
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Re: episodic to chronic question
« Reply #5 on: Apr 10th, 2008, 11:21pm » |
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Hi John
Your description of going chronic is as good as verbatim to my experience in going chronic, I only had one session with the beast then had a five year break before getting it again & it simply never left.
Interesting to note that the cycle you had before going chronic was your worst as this is what happened for me; the first one was nothing to laugh about but the second was a real killer & the Hypathally really did a burn out, along with the clusters I developed R.L.S. & exploding head syndrome all 3 conditions coming from a wonky hypa.
For me beer is definitely out of the question but I can drink stout, white wine & scotch but not when in a high cycle, I had 1 beer about 3 months ago to see what would happen & within 20 minutes I was shadowing real heavy, so beer’s of the shopping list.
I’m not sure yet just how my high cycles are going to pan out; my first big break was 261 days, then a 50 day high & currently sitting on a 246 day low, if I’m going to stay constant I should be starting again in around 15 days time, right in the middle of my annual leave break, but I guess only time will tell.
Cheers
Barry
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Giovanni
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Re: episodic to chronic question
« Reply #6 on: Apr 11th, 2008, 7:24am » |
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Thanks so much to everyone here for their insight into what to expect here. On a positive note, I am highly functional and can do most anything I want. I drink a couple generic Red Bulls per day along with lots of coffee. My oxygen orders have diminished over the last couple months to about 2 Ms and 1 E every three weeks. I do have nights that are good occasionally. I’m able to take my motorcycle road trips (just returned from Florida). Ambient CR helped when on these trips with the night wake ups that a friend had given me.
And Mary Ann, you are on with the absolut martini—I don’t care if the head explodes 
Thanks Again,
John
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AussieBrian
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Re: episodic to chronic question
« Reply #7 on: Apr 11th, 2008, 7:37am » |
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on Apr 11th, 2008, 7:24am, Giovanni wrote:On a positive note, I am highly functional and can do most anything I want.
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Victim or Victor?
I've been danced by the devil,
Now it's my turn to lead.
Been trounced by a demon,
I've since cut down like weed.
Lanced that old dragon,
Rejoiced to see it bleed.
I've beaten the beast,
Didn't concede, I'm freed.
Did it last time, not the first time,
I'll do it again.
Square up to the monster,
Anywhere or when.
Take a broom to the witch,
And drown the old bitch,
Prance and dance on the grave,
Adieu and amen.
Elves in my temples
And imps in my head.
Hobgoblins, snot-weevils,
It's bed that I dread.
Nightmares and fright-scares,
Who cares 'cos I dare
Say I've won! You bum-scum,
And now you're all dead.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Giovanni
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Re: episodic to chronic question
« Reply #8 on: Apr 11th, 2008, 9:50am » |
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on Apr 11th, 2008, 7:37am, AussieBrian wrote:
Victim or Victor?
I've been danced by the devil,
Now it's my turn to lead.
Been trounced by a demon,
I've since cut down like weed.
Lanced that old dragon,
Rejoiced to see it bleed.
I've beaten the beast,
Didn't concede, I'm freed.
Did it last time, not the first time,
I'll do it again.
Square up to the monster,
Anywhere or when.
Take a broom to the witch,
And drown the old bitch,
Prance and dance on the grave,
Adieu and amen.
Elves in my temples
And imps in my head.
Hobgoblins, snot-weevils,
It's bed that I dread.
Nightmares and fright-scares,
Who cares 'cos I dare
Say I've won! You bum-scum,
And now you're all dead.
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Thanks Brian, I'm going to print this one.
John
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