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How does your cycle start? (Read 3256 times)
Jamz
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How does your cycle start?
Dec 18th, 2013 at 10:57am
 
Hello all,

I am currently experiencing what I believe are shadows for about two weeks now (nowhere near the pain that I felt during my first CH cycle which occurred February - April of last year) but pressure, numbness in my left side of face, temple, behind the eye with intermediate sharp pains lasting a few seconds. I am curious if any of you experience shadows leading up to your cycle? What if anything accompanies this cursed blight? Also interested in how shadows relate to cluster headaches in general.

I have started back on my D3 regimen hoping it will suppress these symptoms.  I am still quite the CH newbie, I must say though, I have learned much more about this strange disorder from all of you kind folks than any of the various clueless doctors I have seen. Thank you all! I do fear however the beast is clawing his way back into my life. Oh how I hate him so.

Thanks for your time.
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maz
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Re: How does your cycle start?
Reply #1 - Dec 18th, 2013 at 11:39am
 
Hi,
Mine have changed, as so many others do. Until recently they came on like a bolt from the blue. One minute I didn't have it, and the next minute I did. It was always a complete surprise and like being smashed in the face with an iron bar.

My latest cycle started as mild shadows which slowly ramped up to about k6, aborted with sumatriptan injection, and then nothing for several days. Then shadows again but no worse than k3 or 4. A few days off and then another big one. It's continued like this for several weeks now and although I have had no symptoms at all for over a week, it means I can not be sure this cycle has ended. I don't know which is worse.
The suma injections are my magic bullet now and I never let it get past k6.
The relationship between shadows and a CH is simple. Shadows is the term we use for a mild attack. A shadow IS a CH but milder, and liveable with. Compared to the alternative I'm happy to have them.
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Drew_Va
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Re: How does your cycle start?
Reply #2 - Dec 18th, 2013 at 12:24pm
 
Nov. 18 I got a headache that was familiar enough where I told my wife "Uh Oh". A few days later I got another. The day before Thanksgiving I got the first of the really bad ones and it was on. Typical for me and these headaches.....they start slowly...ramp up in intensity, frequency and duration.....peak.....then ramp back down. 6-8 weeks later they leave for two years (three years this time)..
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Batch
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Re: How does your cycle start?
Reply #3 - Dec 18th, 2013 at 2:35pm
 
Hey Jams,

Now you know why we suggest staying on the anti-inflammatory regimen with 10,000 IU/day year-round.

See your PCP for a lab test for 25(OH)D.  Odds are you're still deficient and at best below 60 ng/mL.

You can speed up the process of building your 25(OH)D reserves to a therapeutic level to find relief from CH by using the accelerated vitamin D3 dosing schedule.

Take care and please keep us posted.

V/R, Batch
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Jamz
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Re: How does your cycle start?
Reply #4 - Dec 18th, 2013 at 4:40pm
 
Thanks for the replies. The shadows, it makes me wonder if they can intensify an oncoming cycle. Yes I have restarted and will stay on the regimen. Going in to have my levels tested after the holidays. Should have stayed on it all along, but I can be quite stubborn at times Smiley

Salaam

James
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shooky
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Re: How does your cycle start?
Reply #5 - Dec 19th, 2013 at 7:30pm
 
Note that this could actually be another kind of face pain such as SUNCT, trigeminal neuralgia or TMD, which are all connected to the trigeminal nerve and are felt in similar areas of the head and face. It's a good idea to see a specialist.
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Mike R
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Re: How does your cycle start?
Reply #6 - Jan 17th, 2014 at 4:34am
 
i get signs of an attack days before it hits.  sensitivity to sounds & smells, ringing in ears, nausea, tiredness, i see strange checkerboard or snowy fuzzy patterns, black spots, things like that usually.  everytime I ignore them.
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Hoppy
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Re: How does your cycle start?
Reply #7 - Jan 17th, 2014 at 5:34am
 
Mike R wrote,
i get signs of an attack days before it hits.  sensitivity to sounds & smells, ringing in ears, nausea, tiredness, i see strange checkerboard or snowy fuzzy patterns, black spots, things like that usually.  everytime I ignore them.

I don't want to worry you. But, i was wondering, have you
had a cat scan to rule out any other nasties.

Hoppy.
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Mike R
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Re: How does your cycle start?
Reply #8 - Jan 17th, 2014 at 6:04am
 
Yes, had cat scan with and without contrast.  I also had an MRI.  All came back clear.  If they told me I had a tumor I would believe them, the pain is unreal.
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w7sg
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Re: How does your cycle start?
Reply #9 - Jan 17th, 2014 at 9:04am
 
Mike,

Same here, all came back clear.  Question, when you are not in attack mode, how does your head feel?

Thx
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Hoppy
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Re: How does your cycle start?
Reply #10 - Jan 17th, 2014 at 5:32pm
 
w7sg,
Same here, all came back clear.  Question, when you are not in attack mode, how does your head feel?

Most folk here, complain of it being sore to touch the top of their head,myself included. On their CH side.

Hoppy.
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Mike R
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Re: How does your cycle start?
Reply #11 - Jan 18th, 2014 at 4:18am
 
When I don't have a cycle episode of headaches by head feels fine.  I forget all about my headaches until they start up again.  In cycle my head tends to hurt moderately at most times and it doesn't hurt to press.  When the pain gets really bad it actually feels a bit better if I try and squeeze my head between 2 pillows.
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Frank M
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Re: How does your cycle start?
Reply #12 - Jan 22nd, 2014 at 12:00pm
 
My first cycle... It wasn't diagnosed as CH for about four weeks, and so I can't recall how it came on.

But my second cycle, I was working late one night and I'd seen a ramp up of migraines for a few weeks leading up to that date... and there was something that evening that I can't put my finger on.  But I remember telling my wife that I "don't feel right."

Went to sleep, woke up at 2:07 AM (easy to remember the time since it was the time they'd start for the next nine weeks) screaming and there it was.

So I now believe, as Spider-Man has his "Spider-Sense", I have "Cluster-Sense".    Smiley
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Jamz
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Re: How does your cycle start?
Reply #13 - Jan 24th, 2014 at 1:15pm
 
Thanks again for the replies. I had my levels tested, I am at 75 ng/ml. Still continuing with the regiment, however the beast now decides to attack during the night. Most every night for that matter. I have had adverse reactions to most of the medications that were prescribed last year. In particular verapamil, Tompamax, Lithium. The 02 doesn't seem to help, I carefully read and followed all steps. The imitrex injections give some relief, but "insurance" only allows for 2 a month!?

Shadows are constant throughout the day that seem to be gradually getting worse. No full blown CH during the day, yet. Can't get any sleep, feel like a zombie all day at work. Completely exhausted. Vertigo setting in... I feel this situation, being the CH themselves, lack of sleep, anxiety, whatever...  has addled my brain. I need my brain working in the IT field.  Sad

My boss pretends to be understanding, but having to take over a month off last year, and currently the constant mistakes, not getting much done, leaving early, I fear will ultimately result in my termination.

/rant over

Thanks for listening

james
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Hoppy
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Re: How does your cycle start?
Reply #14 - Jan 24th, 2014 at 3:19pm
 
Hi James,
Have you tried Melatonin? It's got a good record for avoiding
those night attacks. You need to take 10-15mg before going
to bed.You can buy it otc at your local Pharmacy.

Hoppy.
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Jamz
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Re: How does your cycle start?
Reply #15 - Jan 27th, 2014 at 10:29am
 
Hello Hoppy

I will give the Melatonin a try. For some reason, I had Magnesium confused with Melatonin and was taking that before bed. Started taking it last night, hope in time it will offer some relief. Cheers!
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