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Topic: When Does It End? (Read 451 times) |
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toader
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When Does It End?
« on: Jan 13th, 2004, 10:20pm » |
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First time sufferer 7+ weeks into my cycle now...
Just got back from the neuro this afternoon
Based on my symptoms she said that I'm still within the cluster and that the medication I'm on is masking most of the harsh and painful realities of the cluster headaches. I will have to stay on the
meds until I'm completely pain free for 2 weeks and then she will wean me off. This was a big disappointment for me.
I felt I was getting better but now I'm not so sure. I guess that some of the wellness was due to the meds. Had an attack last night and got an Imitrix shot. I know that healing is a day by day, little by little process and
even then I come crashing back down to earth.
I'm on Topamax, Verapamil, Melatonin
I'm still have daily left side headaches - though nothing like the horrid attacks before I was on the meds - esp the Verapamil.
How will I know when the difference between real pain free and pain free due to meds?? 
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BlueMeanie
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Toader,
Sorry to hear that you're still getting beat up by the Beast. It's hard to say when the cycle is really over. Sometimes you go a few days and get excited that it's over, then WAM.
Do you get shadows ? For me that's a good sign if it's almost over. The shadows seem to disappear eventually. I cannot drink ANY beer in cycle. The final test for me after the shadows have left a few days. Drink a 6 pack of MGD's. (May not take that much, but if I'm goin' for the ultimate test, mightest well do it right !).
PFDAN
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TxBasslady
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Re: When Does It End?
« Reply #2 on: Jan 13th, 2004, 11:04pm » |
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Well, the doc said you have to stay on meds till you've had 2 weeks pf. Then she will wean you off meds.
More than likely, you will know when the weaning process starts.
Maybe this cycle will end for you soon. I sure hope so.
I don't know how long your cycle's usually last. Could be that the cycle will end before you have to see the doc again.
You know, the beast is a sneaky bastard. He comes and goes at will. It's a helluva way to have to live.....never knowing when or if he will return. Try to remain optimistic......and enjoy the pf time that you get.
Let us know how you're doing,
PF vibes,
Jean
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Rick_K
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Re: When Does It End?
« Reply #3 on: Jan 13th, 2004, 11:10pm » |
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Toader.
The beast if different for us all, likes to fuck with us..for me towards the end of a cycle I'll get a PF day every few days, then a couple PF days in a row...then a couple more, etc.
I'll stay on the meds for a at least a month after he leaves and stay away from all known triggers like beer.
Have you tried O2? If not, you should...
Hang in there, were pulling for ya.
PF vibes are coming your way.
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JohnM
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Re: When Does It End?
« Reply #4 on: Jan 14th, 2004, 3:29am » |
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Welcome Toader. Sorry to hear you are a first timer, bad luck!
My cycles usually start with a few weeks of shadows/mild headaches every day or so that eventually become daily occurrances, and then ramp up to the big ones 3 or 4 per day for about 2 months when only imigran works, then taper down to the daily shadows again for a week which start reducing to every few days then - gone for another year! Then I can get back onto the beer and wine 
Sounds like you are about due to end you cycle soon, I really hope so.
John
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Bob_Johnson
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Re: When Does It End?
« Reply #5 on: Jan 17th, 2004, 9:46am » |
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The difficult part first: CH is one of the more unpredictable disorders you could have "selected"! Sorry. As you read about folks experiences here, you will see a wide variety of duration, timing, effectiveness of various meds, etc.
In terms of emotional survival, work to replace the questions which cannot be answered: why?, when?, what if?--with solid knowledge about how to treat yourself. Self-confidence in knowing how to care for youself reduces anxiety, depression, etc.
I'd suggest you start with one of these books and then, after you have an overall view of treatment, start to fill in with the information you find here and on OUCH.
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HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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As you understand your body's signals, you will understand when your cluster cycle has ended or when one is likely coming. This "shadow" business is real, but hard to explain: it's almost an intuitive experience but many of us have come to trust it. Perhaps one of the clearest signs that a cycle is over: You stop thinking about cluster/pain, etc. everyday.
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Bob Johnson
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toader
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Re: When Does It End?
« Reply #6 on: Jan 17th, 2004, 11:35am » |
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Thanks everyone for your encouragement and support. I got plugged into the whole system early on so I'm all set all the right stuff - neuro, O2 tanks, etc, etc. All that is nothing without my loving wife who is watching over me step by step throughout all this.
Yesterdays was a real bitch - my first 2 Imitrix day in a while. Spent most of the day either screaming in pain, suckin down O2 or singing Blue's Clues at the top of my lungs. Yes, my friends, the circus is in town.
Bob - Thanks for the book advice. I'll have to defer to my wife on those. Thanks to Dopeymax, my current reading level is Garfield. She's a scientist anyway and downloads clinical journal articles on CH which I can't even pronounce.
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Giovanni
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Re: When Does It End?
« Reply #7 on: Jan 17th, 2004, 12:04pm » |
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Hi Toader,
For me two weeks painfree is my marker for the end of a cycle. I had been one week pf on one cycle then-bam start again. I usually test myself around week three with a stiff martini. If I survive that I'm home free for awhile.
Good luck!
John
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Edski_1
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Re: When Does It End?
« Reply #8 on: Jan 17th, 2004, 1:31pm » |
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Todaer, can sympethize many ways...IT pro, topemax, relatively inexperiences with CH...I did have an experience 13-14 years ago, but it was so long ago, mis daignosed, that I can't really tell if three months in the cycle is mid stream near the end or just getting cranked up. I remeber dealing with these beasts for abotu a year or more...so I may be in for a slog.
Hearing all I can try is helpful...facing it with unemployment staring me in the face is scary, a day in. I see the Neuro a couple of days before the benefits expire...I will Cobra it for a while at least...so I know I'll be treating it for a while, but I can only hope that the drugs break the cycle, rather than just mask it.
I gather, from the reading I've done, for every person who has a relatively repeatable cycle there are people who have cycles that are not quite as similar. Is that a valid assumption?
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pubgirl
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Hi Toader
Bad news that you are a first time sufferer. It is a big shock when it first happens and it does take time to accept that you have this nasty condition. I refused to accept it until my 3rd cycle!
The good news!
You may have huge gaps between cycles when it does end! Some episodics even go years between.
It sounds like you have a good Doc and a great wife, that may make all the difference as it hard being alone with CH. Your wife may even come up with something we have missed when she reads all these articles!
Keep posting and let us know how things are
Wendy
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| « Last Edit: Jan 18th, 2004, 3:44am by pubgirl » |
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stevegeebe
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Re: When Does It End?
« Reply #10 on: Jan 18th, 2004, 8:59am » |
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Hey Toader.
I tempted the beast last July after a 4 month cycle. After two weeks I stopped taking my meds. He came back for another 4 month visit.
Don't tempt the beast.
Good luck.
Steve G
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