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The beast returns - 2013 (Read 8137 times)

Shane Lawrence

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The beast returns - 2013
Jan 30^th, 2013 at 11:01pm

Starting a journal for this cycle.
Started yesterday, January 29th 2013
Around 11:20 pm, after having gone to bed and sleep around 9:45. Tried to sleep through the first 10-15 minutes of it I think, before I realized what was happening.
Intensity: 6/10
Duration: 35-40 minutes

Last cycle was November 2011. Documented that one here too, you guys are always supportive!

Something unique this time: I may have triggered it! I was on the floor playing with my kids when my 5yo son brought me a cold pack from the freezer that he has put on a goose egg on his head the day before. I put it on top of my head, and within seconds, felt the aura or shadow, but mixed with a kinda "brain freeze" sensation. Then just as I suspected, after I fell asleep the Beast sets my head on fire and kicks me in the face.

No abortives on hand yet, but my best treatment is diversionary. Intense, heavy music pumped LOUDLY through headphones directly into my brain. If my vision permits, and my nose isn't running profusely, I also sometimes mix that with a little call of duty or other intense video games, with lots of gunfire and explosions. As a combat veteran, it just works for me Cheesy

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djphrenzy CH.com Junior Offline I Love CH.com! Posts: 93	Re: The beast returns - 2013 Reply #1 - Jan 30^th, 2013 at 11:15pm Interesting diversion. I find my eyes somewhat useless during an attack... I find it difficult to look at things.
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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: The beast returns - 2013 Reply #2 - Jan 31^st, 2013 at 9:41am A little early to claim a full blown cycle, so don't loose any more sleep over this just yet But yeah, start getting your arsenal ready in case beasty has decided he's back for another game. Also props for being able to do anything besides try to claw your eyes out during one of these headaches!
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Shane Lawrence

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Re: The beast returns - 2013
Reply #3 - Jan 31^st, 2013 at 10:51am

1/30/13 - onset 11:15PM
Intensity: 6/10
Duration: <25 minutes
Abortives: None
Diversions: Loud Music and Video Games
========================
Ya it came back again, 2 nights in a row. I have never had a cluster that wasn't part of a +/- 12 day cycle.
I am grateful they seem to be pretty mild, little more than half of what they can be.
I had mentioned in previous posts that I think I have a fairly high tolerance for pain, due to some other injuries and such I have experienced before, so when its just a 6, I can still play xbox, but poorly =)
(Broken femur, shot in the face, shot in the shoulder, shot in the elbow, Cancer survivor... Its been a rough ride so far and I'm only 42!)

Here's a word of warning though guys: My father is a chronic clusterhead, since about 2003 due to a Traumatic Brain Injury, and his cyclic turned chronic even constant. almost 10 years of it, and hes now going into renal failure. Watch how much you take of what medications, and get your bloodwork monitored to make sure your not overworking your liver or kidneys trying to metabolize any meds you may be taking as preventives or abortives.

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Guiseppi

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Re: The beast returns - 2013
Reply #4 - Jan 31^st, 2013 at 1:22pm

The advice on meds is good stuff...especially the over the counter stuff. Many assume since it's not prescription it can't hurt you...that's FAR from the truth!

Since you've been away a bit, check out this regimen.

Follow this link to the medications section of this board and read the post Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

Hopefully it's a false alarm and Beasty is just messin with ya! Wink

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Shane Lawrence

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Re: The beast returns - 2013
Reply #5 - Jan 31^st, 2013 at 3:25pm

I saw it in a PM when i logged in yesterday, so thanks.
I already take a large amount of high quality fish oil and other supplements. I exercise ALOT and am in top physical condition (no really!)(yes, like triathlon condition)
If I don't take them, I spend a lot of money, and calories, on expensive and heavy red meats or sushi, and this helps curb those cravings. I listen to my body to adjust my diet and activity levels and large amounts of these oils help me tune that.

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9thNerve

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Re: The beast returns - 2013
Reply #6 - Feb 1^st, 2013 at 10:41pm

I'd still consider fine tuning your regimen to the D3 "123.."
The other supplements all work together to maximize the effects of the D3 and Omega's.
I'm on Day #10 of the regimen...had taken 10,000iu D3 and 2grams Omegas for a couple years (along with the B vits and COQ10)...really hoping to see results from this regimen that all the CH'ers swear by.
I,too, was in great physical shape, Biking,weightlifting,tri's etc so proper nutrition and supplements were/are a part of my regimen. I have noticed that if I keep my HR below 140 (ideally 130,but well, lets say I'm not in the shape I was 2 years ago before all this began) ...anyway,keeping the HR down helps with the headaches because as I am learning, our goal is vasoconstriction of the artery in the head thats causing us grief! Exercising causes vasodilation. Good luck!

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Shane Lawrence CH.com Junior Offline I Love CH.com! Posts: 38 Saratoga Springs Utah Gender:	Re: The beast returns - 2013 Reply #7 - Feb 4^th, 2013 at 1:17am 03Feb13 Onset 10:58PM Intensity: 8/10 ===== Night 6 night in a row, hopefully mid-cycle now Intensity kicked up a notch or 2. no video gaming tonight, just music and trying not to claw my eyes out. ===== Gone by 11:50 duration <50 minutes
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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: The beast returns - 2013 Reply #8 - Feb 6^th, 2013 at 9:17am What kind of abortives are you using right now? Any caffeine or energy drinks? Sometimes those can help knock the pain down a notch or two, if not kill the headache altogether.
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trapper13

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Re: The beast returns - 2013
Reply #9 - Feb 10^th, 2013 at 5:31am

i was getting mine every 2 yrs to the date Jul 14th, but last month my sis told me d3 &q10 would help lower my cholesterol? started on it everything was fine then black ops 3 came-out did a 2 week marathon,lol, 3 days ago in the middle of a battle BAM!!! right eye stab Shocked

i was so freaked i couldn't even log in, lol, had to make a new user name, man the panic is back, EVERY SECOND EVERY DAY i wait, is the beast early? or will this last till Sep?? i hate the waiting only condolence is im retired on disability so i can crawl in a hole for as long as necessary, crap -- i was so close to a golden gun Grin

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Guiseppi

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Re: The beast returns - 2013
Reply #10 - Feb 10^th, 2013 at 8:20am

Welcome to the board Trapper. Sleep deprivation, or even radically changing my sleep cycle, can bring on an attack in cycle. You're definitely on to something with the D-3, it's a little more involved then a "one-a-day" vitamin, but not by much!

Follow this link to the medications section of this board and read the post Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH. It's kept me off cycle for almost 3 years after over 30 years of being an episodic.

Then read up on oxygen. Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

This link will show you how to get set up with welding oxygen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: The beast returns - 2013 Reply #11 - Feb 10^th, 2013 at 1:56pm Hi and welcome Are you taking any medication for your CHs? Anything like verapamil, lithium or topomax to prevent them? And for aborting them, have you oxygen or imitrex injections?
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trapper rich CH.com Junior Offline I Love CH.com! Posts: 31 Gender:	Re: The beast returns - 2013 Reply #12 - Feb 20^th, 2013 at 9:38pm
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darkwalker CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 23 x0\|Denton\|USA\|\|0\|0\|TX,Texas	Re: The beast returns - 2013 Reply #13 - Feb 23^rd, 2013 at 11:05am Not that weird. I triggered an episode once by riding my motorcycle in the cold. I felt it in my eye, and on my cheek. It was that weird halo feeling. The CH didn't start immediately, but came on later.
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Shane Lawrence

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Re: The beast returns - 2013
Reply #14 - Mar 4^th, 2013 at 12:27pm

Haven't been logging... shame on me. By day (night) freaking 34 its kinda irrelevant. Logging now to put my thoughts in order to see the dr tomorrow.

So.. Day 34...
Clusters have been steady for over a calendar month, 30-60 minutes after I fall asleep.
Not every single night, but 5-6 nights a week.
My cycles have always been 10-14 days long, in the fall. Having a 30+ day cycle in jan/feb is out of the norm for me.

Have been using abortives, have a appt tomorrow to talk about preventives and refill abortives.
No preventives yet, I have never used them because my cycles have been short enough and far enough apart I couldn't justify it to myself. 30 + days later I need to prevent and abort this cycle.

I do use Imitrex injections or tablets as an abortive, and it is pretty effective.
Have tried determining anything that causes or makes it worse, such as adjusting sleep and exercise schedules, OTC medications or other supplements, getting more sleep, getting more/less exercise, pre-bedtime evening habits, etc. No luck.

The aura has been steady between 6-8 pm, what I describe as fireworks. Bursts of light and pain that move and quickly dissipate, each lasting just a burst of a second or two.
There were 2 days last week that I got an aura around 6-6:30 PM, that didn't stop for over an hour, and became a mild cluster (5/10) over an hours time. That lasted until I took the imitrex tablet and aborted the entire process around 8pm.

The headaches started out mild but quickly ramped up in intensity. I wouldn't say I have had a 10/10, but one late last week, and last night came close. When I cant lay there with my music blaring (diversion) and have to get up and pace with my music, then its a 9. For the most part this cycle has been averaging intensity 7/10.

Other symptoms: Always behind my right eye, Almost always leaves me with a hangover the next day, almost always includes right eye tearing, right sinus running, nausea, and cold sweats.

I no longer have any problem falling asleep after the headache due to side effects from the imitrex.

Thanks for listening guys, and allowing to organize my thoughts and characterize my headaches before I go to the dr tomorrow.

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ndhillst

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Re: The beast returns - 2013
Reply #15 - Mar 4^th, 2013 at 11:24pm

Shane, best of luck at the neuro. I hope you find a preventative that works very early in your seach! I always got the post CH hangover, too, although since mine were daytime it lasted the rest of the day robbing me of all energy and leaving me feeling "beat up" often to the point of not even being able to get out of bed or off the couch to prepare a meal. Many non-sufferers don't realize that the after affects can also be pretty debilitating.

Again, best of luck!

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Shane Lawrence

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Re: The beast returns - 2013
Reply #16 - Aug 9^th, 2016 at 1:56am

The Beast returns, 2016.
FUUUUUUUUUUUUUUUUUUuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuu
k
=======
08Aug16
Onset 11:24PM
Intensity: 8/10
=====
Second Headache in 2 weeks. Had a Cluster perhaps 7-10 days ago. Did not log it. It did not return immediately.
Intensity hung out at about 5 exactly 10 minutes, then popped to a 9.
Abortives:None
Diversions: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

+ Right eye tearing
+ Nausea

12:00AM started to subside - 4/10
12:05AM subsided enough to function, 1-2 with a few spikes to 6.
Going back to bed. Will checkin again in the morning.
Duration: 36-40 minutes

2011, 2013, 2016.

« Last Edit: Aug 9^th, 2016 at 2:14am by Shane Lawrence »

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thierry

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Re: The beast returns - 2013
Reply #17 - Aug 9^th, 2016 at 4:23am

Hi Shane, sorry to see your beast has come around again.
If you have been popping in and out of here since your last cycle, you've probably read about Batch's vitamin D3 regimen.
It works for 80% op people who take it (myself included)
You can find out about it in the thread "123 days pain free and i think i know why" in the "medications, treatments, therapies" section of this forum.
The regimen consists of taking a daily high dose of vitamin D3 and some co-factors.
if you have any questions, fire ahead.
All the best

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Shane Lawrence CH.com Junior Offline I Love CH.com! Posts: 38 Saratoga Springs Utah Gender:	Re: The beast returns - 2013 Reply #18 - Aug 9^th, 2016 at 6:03am I have never had more than one per night before. Always onset at about 11:30 pm. This sucks. ======== Onset: 03:43 Intensity: 8/10 + Right Eye Tearing + Nausea Subsided: 04:10 Duration: 27 minutes ========= Pain mostly gone by 04:10, still waiting for tearing and nausea to subside.
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: The beast returns - 2013 Reply #19 - Aug 9^th, 2016 at 6:37am Shane, Thierry is right....D3 is helping over 80% of us. Read up on it here: (Particularly part 2), Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Peter.
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Shane Lawrence CH.com Junior Offline I Love CH.com! Posts: 38 Saratoga Springs Utah Gender:	Re: The beast returns - 2013 Reply #20 - Aug 9^th, 2016 at 11:50am I was already taking 1000 IU of D3, from blood tests that showed a deficiency. I have been out of fish oil for a few weeks though. This morning, I took 10,000 IU of D3, and 5 fish oil caps (normally take 2). Lets see how it goes, thanks for the support.
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: The beast returns - 2013 Reply #21 - Aug 9^th, 2016 at 1:30pm Shane, That's good. Have a look at the loading dose options in the link I sent you. The quicker you get your serum levels up, the sooner you'll be pain free. It's perfectly safe. Regards, Peter.
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Shane Lawrence

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Re: The beast returns - 2013
Reply #22 - Aug 9^th, 2016 at 7:27pm

Having a bit of a shadow most of the afternoon.
Intensity 2/10
Right eye watering mildly.
=============
The 10k IU I took this morning didn't have any adverse affect, but considering I had been taking 2k iu a day for the past year, I think I'm safe to take the rest of the 50k iu loading dose this evening. I REALLY want to sleep through the night tonight.

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thierry

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Re: The beast returns - 2013
Reply #23 - Aug 10^th, 2016 at 1:46am

Hi Shane,
good to see that you are ramping up th D3 so that your levels will be high enough to provide relief from th beast.
It is unlikely that you would feel relief from the pain of CH from taking 1 dose of 50000iu D3.
The relief comes when the levels reach around 80nm/ml of blood (200nmol). This can be achieved -when starting from a very low level- by taking 600000iu D3 over time. It can be taken over 2 to 3 weeks. To ramp up your levels quickly, you could take 50000iu D3 per day for 5 days, as well as the all important co-factors.
Have you had your blood levels tested?
All the best

« Last Edit: Aug 10^th, 2016 at 1:49am by thierry »

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Shane Lawrence

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Re: The beast returns - 2013
Reply #24 - Aug 10^th, 2016 at 8:19am

Have not had my blood levels tested lately. I just had a set that came back last year with a D3 deficiency, I don't know is it was through the metabolites talked about in your post.

I did not have a headache last night.
I did have an unusually heavy shadow most of the afternoon and evening. I was setting up and testing the o2 setup after dinner and took about 3 minutes of 8 liters, and aborted the shadow.
I was also in the middle of some 'vigorous physical activity' since it was my wifes birthday, when 11:30 rolled around.
So whether it was the D3, the o2, or the physical activity/change of circadian rhythm, Ill take a good nights sleep where I can get it.

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