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marc2010 CH.com Junior Offline I Love CH.com! Posts: 35 Uk Gender:	Had a really bad cluster headache Dec 18^th, 2013 at 2:31am Hi all I woke up on Tuesday morning at 2am with a severe cluster headache took about 1hr to pass using oxygen. And since it past I have had this pain in my right eye like a stabbing pain my eye feels strange has anyone else had this after a bad ch? I suffer chronic ch and never had this before
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Batch

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Re: Had a really bad cluster headache
Reply #1 - Dec 18^th, 2013 at 8:16am

Hey Marc,

Sorry you're having a rough time... What are you taking for your cluster headaches? Have you seen you PCP for a lab test for 25(OH)D?

25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range is 30 to 100 ng/mL, (75 to 250 nmol/L).

Nearly all cluster headache sufferers (CH'ers) who have gone in for this lab test during active bouts have had their results come back indicating a deficiency.

80% of CH'ers who start and stay on the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 have experienced a significant reduction in the frequency, severity and duration of their CH. 75% of them experience 24 hour pain free days and 60% remain essentially pain free.

See the following link for details then discuss it with your PCP if your 25(OH)D lab results come back less than 30 ng/mL, (75 nmol/L):

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An up-tic in the frequency and severity of CH can also be triggered by a low arterial/systemic pH, (too much acid). Starting a GOMBS diet can help elevate your pH if you avoid eating sugars and refined carbohydrates. GOMBS stands for Greens, Onions, Mushrooms, Beans/Berries and Seeds/Nuts. See the following link for details:

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Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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wimsey1

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Re: Had a really bad cluster headache
Reply #2 - Dec 18^th, 2013 at 8:39am

Hey Marc, I know exactly what you're talking about. Being a fellow chronic who also gets nighttime hits, I empathize. After one as intense and long as you're describing my eye does indeed feel funny, and it throbs. An hour on O2 is a long time to have to wait out a hit. Do you have other abortives? Energy drinks (had to use one last night myself), Imitrex or Migranal? Sometimes you gotta go beyond the O2, know what I mean? blessings. lance

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marc2010

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Re: Had a really bad cluster headache
Reply #3 - Dec 18^th, 2013 at 9:33am

Hi thanks for the reply I have went to my gp had a look at it says looks a bit swollen part from that it's ok I have never had this kind of pain lasting this long. I just take oxygen I was getting them GON blocks they stopped working and then I was on Gabapentine they didn't work just felt tired all th time... What's the name of that test thanks

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Had a really bad cluster headache Reply #4 - Dec 18^th, 2013 at 9:30pm It might be worth getting an optician to look at it. They have much better equipment to look at the eye and to look for any issues. Whilst it is related to when you get the CH, it might be something non-CH related that is just aggrevated by the CH.
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marc2010 CH.com Junior Offline I Love CH.com! Posts: 35 Uk Gender:	Re: Had a really bad cluster headache Reply #5 - Dec 18^th, 2013 at 10:42pm Hi thanks will try see one in the morning wil keep use updated
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marc2010 CH.com Junior Offline I Love CH.com! Posts: 35 Uk Gender:	Re: Had a really bad cluster headache Reply #6 - Dec 19^th, 2013 at 1:01am Anyone know what treatment works the best for night time attacks? That's what I get the most alway wake up at 2am with them
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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: Had a really bad cluster headache Reply #7 - Dec 19^th, 2013 at 9:50am The worst ones never seem to totally go away. For me there's always some lingering pain and nausea that can last for an entire day. Hope you never see one of those again.
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marc2010 CH.com Junior Offline I Love CH.com! Posts: 35 Uk Gender:	Re: Had a really bad cluster headache Reply #8 - Dec 19^th, 2013 at 12:02pm So went to get my eyes checked they looked behind them says it's all ok also down a blow test to test the pressure behind my eyes everything was perfect.. Only thing I could think of is that I didn't have any for 8days which is a record for me so they came back with a sting
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Had a really bad cluster headache Reply #9 - Dec 19^th, 2013 at 11:46pm Good to hear that everything is fine with your eyes, you only get one pair and you need to ensure they are well looked after. Here is hoping to a long, long break from CH for you soon.
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BobG CH.com Hall of Famer Offline Posts: 6422 St. George, UT Gender:	Re: Had a really bad cluster headache Reply #10 - Dec 20^th, 2013 at 6:15pm Hey marc, 1 hour on O2 seems a bit long. Tell us about your O2 set-up. Non rebreather mask? O2 regulator setting at 25?
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Mike NZ

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Re: Had a really bad cluster headache
Reply #11 - Dec 20^th, 2013 at 8:53pm

BobG wrote on Dec 20^th, 2013 at 6:15pm:

Hey marc, 1 hour on O2 seems a bit long. Tell us about your O2 set-up. Non rebreather mask? O2 regulator setting at 25?

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Re: Had a really bad cluster headache
Reply #12 - Dec 20^th, 2013 at 10:19pm

Someone on the way to being rich may have the cure for the late night wakers. 2 red bulls asap other than that I'd say a pillow and cold bathroom floor is the 1-5 am answer. That bitch, you heard me BITCH, the Beast is on top by the time one wakes from a CH so it's mano y mano. Meds will work but it's still full kip whatever it is till the med kicks in so it's almost better to not med for those.

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marc2010 CH.com Junior Offline I Love CH.com! Posts: 35 Uk Gender:	Re: Had a really bad cluster headache Reply #13 - Dec 22^nd, 2013 at 6:10am Hi it's Non rebreather mask and my O2 regulator setting only has 15 on it I just turn it all the way up it's just really the night time ones that is worse every morning at 2am I get them once it's away I go back to sleep 40mins/ 1hr later boom it's back!
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marc2010 CH.com Junior Offline I Love CH.com! Posts: 35 Uk Gender:	Re: Had a really bad cluster headache Reply #14 - Dec 22^nd, 2013 at 6:14am I remember my neuro said because I started of chronic I have a good chance they will go episodic or over time go away them selfs with age is this correct? Has anyone went from chronic to episodic? Or even went away
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Re: Had a really bad cluster headache
Reply #15 - Dec 22^nd, 2013 at 8:56am

That one's sadly a real crap shoot. We have had members on their 30's that just stopped having them, some in their 50's that just stopped. Then we have people in their 70's still getting hit. I hadn't heard a co-relation between being chronic or episodic....and that determining a likelihood of aging out of them. Undecided

Have you tried melatonin for the night time hits? Many have found they can avoid the night time terrors altogether by popping melatonin 30 minutes before bed time. You have to play with the dosing, start at 9 mg, some have to go as high as 18, some combine slow release and standard release to get to sleep and then get them through the night.

Joe

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