Hi everyone, I'm into the 10th week of my cycle. Usually my cycles last for only a week and then I get 3 years of remission. I was on Sibelium, which is also a calcium channel blocker, for about the first month or so. That helped in reducing the frequency and intensity of the pain. The hits have stopped so the doctor made me stop taking Sibelium. Though I haven't had a real hit for about a month now, I've had shadows and twinges for about a month or so now. I'm taking a daily dose of 50 mg of Topamax for that. The shadows and twinges also move from one side of my head to the other. Is that normal? Could I be at the end of my cycle or are the meds just working to prevent the hits? Thanks guys.

Shadows are CHs, or at least their precursor. In order to proclaim liberation from your cycle you need to be both shadow and full attack free, although I suspect shadows occurring even when off cycle can be a warning signal that you still have CHs. A few have mentioned their headaches move from side to side but it is rare. Have you tried regular abortives to deal with the shadows? I know I have less success aborting them for good and all than I do with full hits, but still...for me O2 can chase the shadows away. Others will chime in. Good luck and God bless. lance

reydelacruzjr wrote on Jul 14^th, 2011 at 3:38am:

Usually my cycles last for only a week and then I get 3 years of remission..

DAMN u LUCKY! :o


I've chased shadows away with strong coffee, rigorous exercise, or O2.

For buggy shadows I use oxygen, and if I'm away from my tanks...(which I don't allow to happen very often! ;))...I will occasionally use excederin for migrains. It's got a whopping dose of caffiene with aspirin. Not something you want to use regularly as it will start causing its own form of rebounds.

And yes, you may be cycling down. That's how my cycles run, an occasional shadow, then attacks that ramp up unil a few weeks into it the cycle is firmly started. Then they taper down the same way until the cycle is done. Others have a fourth of July spectacular where they get slammed repeatedly, and then the cycle just ends. Personal experience is the best indicator, but with the beasts ability to morph, still not a guarantee. That's why you see this phrase posted so often here, "Enjoy your pain free time. ALWAYS be ready to do battle." Hope beasty is on his way out for you.

Joe

What part of the country do you live in? I ask because I am in NJ, and this "summer" we're having is awful and has added to my hits, especially the changes in barometric pressure. When it's not actually raining, it's threatening rain every other day, and I can always feel the changes before the weather channel comes on.

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When I could not find Sibelium as a U.S. med I realized that you were not in the U.S.

To your question: since this med is not available in in the U.S. we will not have any direct experience to offer. The significance of "shadows" is not entirely clear not are ways to treat them. Sometimes simle OTC pain meds will do it, others find staying on low dose Verap. is useful.

I suspect that you will have to try several approaches to determine what works for you. One of those issues where individual variability dominates.

Thanks. It has been so long since I joined, I didn't realize I never completed my profile, so I just did.

Mike

Hey guys, thanks for the replies. I'm actually from the Philippines. I've tried taking coffee and red bull for my shadows, but they don't seem to work. I was never prescribed with O2 so I haven't tried that yet.

Funny thing though, alcohol has always been a trigger for me and I did the beer test a couple of days ago and didn't get any headaches. That should mean that I'm out of cycle already right? But it wouldn't explain why I'm still having the shadows. I've been reading a lot about people having shadows that go on for months and I'm getting anxious to be honest. Hope these shadows go away soon.

"Shadows" is a term which was coined here some time ago. Since it isn't a medical term, there is no agreed upon definition which we can all use (as in a medical dictionary).

So, usage here will reflect some degree of personal understanding and use of the word--which is not ussually expressed. Point being: read and use the term as having soft edges. Sort of like saying, "the sky is clearing". We all understand but the actual understanding will vary between us.

This is the only medical commentary I've run into and gives some grounding to the question.
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Curr Pain Headache Rep. 2001 Feb;5(1):55-9. 


Premonitory symptoms in cluster headache.

Raimondi E.

Catedra de Neurologia, Facultad de Medicina, Universidad Nacional de Rosario, 9 de Julio 3826, Rosario 2002 PKP, Argentina. raimondi@cablenet.com.ar

Cluster headache is one of the most excruciating headaches affecting human beings--especially the male sex. Most of the cluster headache cases are of episodic nature, with active cluster periods lasting generally between a few weeks and 2 or 3 months. A still undetermined percentage of patients report nonpainful sensations preceding the onset of the pain attack for a variable period of time. If occurring only a few minutes or a few hours before the onset of pain, such symptoms are called prodromal. When occurring for several days, weeks, or months before the pain, they are termed premonitory symptoms. The author believes that premonitory symptoms have not been properly diagnosed and emphasizes the need to investigate their presence, because by knowing them advances can be made in the understanding of the physiopathology of this particular cephalalgia. Furthermore, it can also allow the physician to be ahead, by giving preventive treatment and stopping or diminishing the intensity and duration of the pain attacks.

Publication Types:
Review

PMID: 11252138 

Some of us can drink alcohol and it doesn't bring on an immediate CH. It seems to be those who have chronic CH, so it isn't a perfect test.

And do look into oxygen. It's an amazingly good abortive in being able to go from agony to pain free in a few minutes. I average an abort time of about 6 minutes (25lpm) which is a long way from the 56-90 minute torture sessions I had before I got oxygen.

Been having shadows since my last cycle a year and a half ago .

What I perceive as shadows are all the symptoms of a ch hit but with either no pain or low levels of pain . My right eye starts to water, right nostril becomes blocked, the muscles around my right eye become stiff (like they would if you were out in a cold wind ) and I also get photo phobic on the right side , when I get some pain, it tends to be around my right eye and sometimes with points of pain around the right side of my head and the back of my neck, all though the pain is no worse than a mild "normal" run of the mill headache.

Fortunately for me I can usually see it off with a can of red bull, but that doesn't work for everyone.

Hope you find some relief from this soon

God bless

Nigel

I would also watch the type of alcohol and the fact that other conditions that you may not be aware of could affect the trigger. beer doesn't seem to affect me, so far (I keep it to 1 or 2), but wine just kills me. Hard liquor has been hit or miss. I've had one mixed drink and been ok, and other times have had a massive explosion in my head. Shellfish is a big no-no in or out of cycle, which is unfortunate, given my family's love for "Joe's Crab Shack". Just be carefule you don't get too comfortable with what you think are not going to affect your hits, and always be prepared away from home, whether it's 02 or a Sumavel shot, Cambia, whatever you need to help you.

Peace and PainFree.
Mike