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  :D

Interesting diversion.  I find my eyes somewhat useless during an attack... I find it difficult to look at things.

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! ;D

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.

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  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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! ;)

Joe

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.

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!

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

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.

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 :o 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 ;D

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  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

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

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Joe

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?

:'( :'( [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif] [smiley=bigguns.gif]

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.

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.

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!

The Beast returns, 2016.
FUUUUUUUUUUUUUUUUUUuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuk
=======
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
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+ 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.

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

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.

Shane,

Thierry is right....D3 is helping over 80% of us.

Read up on it here: (Particularly part 2),

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Peter.

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.

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.

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.

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

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.

Hi Shane,
delighted to read your post.
It is likely that you were hyperventilating during the "vigurous physical exercise" and that might have kept the beast at bay.
You'll know what to ask your wife when you feel shadows coming on. She should be only glad to help with your headache therapy  ;) ;) ;)

Onset: 01:40
Intensity: 10/10
+ right eye watering
+ nausea
+ Abortive O2
Distractions of music only, extremely light sensitive
Subsided by 02:00, Duration about 20 mins.
==============================
I have almost forgot what it was like to have a full 10 kips. It took me 15 minutes to get out of bed, go pee, and get downstairs to my chair with the o2 and music, etc. Its just difficult to function and do anything with a full 10 kips raging in your head.
I guess it doesn't help that I'm recovering from a broken foot and ankle, and open repair surgery, So I'm on crutches and a scooter, no walking on it. Try and imagine sliding down 2 flights of stairs on your butt, while battling a full 10 kips.
It seems that almost as soon as I got on the o2 and distractive music it started to subside. i wonder if it was the o2, or just lucky timing.

At this time I feel extremely luck I can pretty much write my own schedule at work, as a professional hacker. The ability to work from home and make my own schedule sure helps to be able to sleep it off tomorrow. I have a clusterhead friend who is a cop and country radio personality, so he is always working nights and has to work through his cycles. God bless you Aaron.

Hi Shane,
my recomendation is that you take loading doses of D3.
50000iu D3/day for 5 days + ALL the cofactors.
that will build your levels up quickly

Yep, took a full loading dose of the D3 and all cofactors yesterday. Will do same today.

Onset: 04:07
Intensity 10/10
Positive for all secondary symptoms: right eye watering, right nose running,  nausea and cold sweats.
Subsided by 04:35
Duration: 28 mins
==================
Difference between 8 and 10? Where my hands are. 8, I can keep them down, just wringing them in my lap. 10, they are in my face, on my head, probing my eye socket and temple, rubbing all over my head.
====
In the past I have had imitrex injections for use at onset, and even though it may not have cut the headache shorter, it may have been preventing a second headache in the same night. Two a night is new for me and sucks twice as hard.

Onset 01:15
Intensity: 7/10 kips
+ right eye watering
+ light sensitive
+ Abortive O2
Subsided by 02:14
=================
Seriously 59 minutes of a 7.
Better than 1 minute of a 10 I guess.
===============
Vitamin D and all supplements on track for rapid ramp up.

Had a second headache between 04:00 and 07:00
Intensity between 4 and 6, as I was able to sleep through the onset and through most of the headache.
Resolved completely by 08:00
It seems that intensity and duration correlate, the lower intensity, the longer duration.
4-6 = 3 hours
7 = 1 hour
10 = 20 minutes
(I know, correlation != causation, but its interesting anyways)

Onset 01:48
Intensity 8-10/10
+ Right Eye Tearing
+ Nausea
+ light sensitive
+ sweats
================
Subsided enough to by 02:30.
Duration:42 minutes
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Hey Shane,

You've made a very informative series of posts about your battle with the CH beast.  As it appears you've been taking most of the anti-inflammatory regimen and have started taking 10,000 IU/day vitamin D3 since the 9th of August and also started the vitamin D3 loading schedule, you should start experiencing some relief from your present CH symptoms within a few days. 

Knowing your 25(OH)D serum concentration at this point will help in adjusting the vitamin D3 loading dose schedule.

As the CHer who developed the anti-inflammatory regimen in October of 2010 and tracked results reported by hundreds of CHers taking this regimen since December of 2010, I've a few suggestions for you.

I've found that an allergic reaction can prevent a favorable response to the anti-inflammatory regimen.  This is due to the fact that allergic reactions result in a flood of histamine. 

When the histamine reaches the trigeminal ganglia, it triggers the release of pro-inflammatory cytokines, specifically calcitonin gene-related peptide (CGRP) and Substance P.  CGRP is a particularly nasty peptide that triggers neurogenic inflammation and pain.  CGRP also stimulates the release of more histamine and this results in a perfect storm that continues until the chemical reactants in this reaction are used up...  and the pain phase of CH ends.

There are several studies that have found CGRP elevated during the pain phase of cluster and migraine headaches.  This flood of histamine makes just about all CH preventatives including vitamin D3 less effective if they're effective at all.

The solution I've found that works best if an allergy is suspected is to take a first-generation antihistamine like Benadryl (Diphenhydramine HCL). 

First-generation antihistamines cross the blood brain barrier to block H1 histamine receptors in neurons throughout the brain including the trigeminal ganglia where CGRP is released in the highest concentrations.  Blocking the H1 histamine receptors stops the perfect storm and allows vitamin D3 and its metabolites to help prevent your CH through genetic expression.

I and several CHers here at CH.com have found that a 25 mg Diphenhydramine tablet in the morning and 25 mg tablet in the evening for a week to 10 days is usually sufficient to allow vitamin D3 and its metabolites to prevent your CH. 

Don't drive if you're taking Benadryl (Diphenhydramine) as it will make you drowsy.  If you need to drive during the day, take 50 mg Diphenhydramine as soon as you get home and are done driving for the day.  Taking Diphenhydramine this way is just as effective.

Viral, bacterial and fungal infections can also reduce the effectiveness of vitamin D3 as a CH preventative.  This is due to our immune systems responding to an insult by viral, bacterial and fungal antigens. This triggers an immune system response that consumes vitamin D3 and its metabolites at very high rates.  This leaves too little vitamin D3 and its metabolites to prevent CH through genetic expression.

As there are no pharmaceutical silver bullets to treat viral infections, our immune systems are the only natural defense and source of healing.  Accordingly, beefing up our immune systems with additional vitamin D3 and vitamin C can be very beneficial for CHers.

I've found that taking a vitamin D3 loading dose of 50,000 IU/day for three to five days and doubling the daily maintenance dose after that for a week to 10 days is effective in both treating the vital infection and preventing CH. 

Adding a 1,000 mg tablet of vitamin C every two hours during the day for a total of 6 grams can also also helpful in combating viral, bacterial and fungal infections.  Vitamin C is a natural antioxident, antiviral and antimicrobial agent with a serum half-life of roughly 30 minutes. 

Humans and guinea pigs lost the genetic resources to synthesize vitamin C so we must obtain it trough dietary sources or supplements.

Take care and please keep us posted.

V/R, Batch

Just for continuity, had two headaches last night.
Both intensity 8/10
Both duration about 28 minutes
Both + right eye watering
Sweats and nausea were minimal
Onset: 10:21 (approx. half hour after going to bed)
Onset 02:40
===========
Plan on making appointment today to get blood work done, will have them draw calcifediol while I'm there.

Batch wrote on Aug 18^th, 2016 at 2:57pm:

Humans and guinea pigs lost the genetic resources to synthesize vitamin D3 so we must obtain it trough dietary sources or supplements.

Humans can synthesize vitamin D3 via our skin (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and many other references), however the amount we make is limited as we're so often covered up when outside or are inside.

Not sure about guinea pigs...

Still have not been in to get my serum levels yet, but I am seeing significantly less pain in number of headaches, and intensity. Yesterday 8/24/16, i woke up with a cluster pain type headache, but only intensity 2/10. it went away within 2 hours. I am still taking the regimen, but at 25000 IUs (5x5000) a day of vitamin D. it seems to be working!

Keep up the therapy, Batch may have missed it but with a broken foot your D3 is being used up faster than normal so it will take longer to get the elevated levels needed.

When I started the D3 I just took 50,000 a day until all I had was shadows before tapering down which was about 5 days. I would go longer if needed and not worry.

Hey Shane,

Howz the head?  Nearly a month since your last post.

Yikes!  I missed the broken foot as well as the vitamin D typo that should have been vitamin C...  Of course we can synthesize cutaneous vitamin D3... if we run around in the mid-day sun clad in a speedo for 10 to 15 minutes without sunblock... It's the ability to synthesize vitamin C we lost.... 

The new plastic lens... "Cadillac" surgery requires reading cheaters...  and I sure as heck wasn't wearing them when I made that typo... even previewing with large fonts didn't help...

Here's a couple good links on trauma/surgery and its affect on 25(OH)D serum concentrations...

Knee surgery reduced vitamin D by 40 percent in 2 days – May 2011

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Fat soluable vitamins decrease quickly after trauma

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Take care,

V/R, Batch