Hi!

I'm a 31 year old male CH sufferer from Stockholm, agonized by - yet fascinated with - cluster headaches since 7-9 years back. Have read a whole lot about our syndrome throughout these years, but quite recently stumbled over these forums.
New member here, so just thought I'd share my CH story, in part just to 'write it off' but mainly because I want to get feedback and to read similarities with other forumites' situations (I've never met anyone with CH or really discussed it with anyone at all, except with not-so-knowledgeable doctors)...

My first CH that I in retrospect can pinpoint was in the end of October 2007. I was in Tokyo for a longer vacation, and the last week or so I got hit every second day, at basically the exact same time at night, 05.20-something A.M., continuing for about two weeks after getting back to Sweden (though now a couple of hours earlier, probably in relation to time zones and my sleeping patterns).

When the period/cluster was over, I more or less googled myself a diagnose, not getting it confirmed with a neurologist until I the next autumn (2008) got hit with my second cluster - at basically the same week and the same time of night as the year before... Since then, the cluster have shifted seasons a bit, getting hit every october from 2007 to 2009, every christmas / early january from 2010 to 2011, and then in late spring / early summer since 2012..... I am in a cluster right now, but only got hit two times so far. My clusters "only" last for 3-4 weeks, and fortunately, I don't get hit more than once per night, even though it has hit 2 times per night on rare occasions. Instead, my 'shadows' are quite bad and last basically 80% of the time within the real hits, with not-so-bad headaches but with horrible pressure from the neck up to my left eye, and on-off nausea. The rest of the year I'm okay (besides un-related illnesses).

For the 'hits', I use only medical oxygen since this works fine for me. The worst of the attack is gone within 15 minutes, but if I stop breathing 100% oxygen within less than an hour or so, the attack often comes back with added strength.. So I basically sit and breath oxygen for 1-3 hours. Injections of Imigran (sumpatriptane) seems to work quite fine as well, but I get horrible side effects (chest pain, sweating, panic, weird sensations in motion and feeling).

For the 'shadows', I find eating lots of magnesium pills throughout the cluster helps a bit, as well as regular pain killers (ibuprofen), but it only takes the edge of. Still feel allround bad even between attacks..

The magnesium pills, by the way, also seem to help with my restless legs syndrome as well as neck/back pains, which is a bonus I guess.

Please tell me your stories! I'm alone out here! ;)

Hi and welcome,
Have you tried slugging back a Red Bull energy drink the
one that contains Taurine to kill off those shadows. Also
Melatonin has a good record stopping those night attacks,
You need to take 10-15mg before going to bed, you can
buy it online from Biovea. Also check out the vitamin D3
regime on here, it's had me CH free for 2yrs.

Hoppy.

Welcome to the board, great to know you're not alone huh? 35 year plus episodic here, pain free the last 4 years on this regimen, please give it a look see:

Follow this link to the medications section of this board and read the post 


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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


Joe  :)

A strong cup of coffee definitely helps me with my shadows.

Love Stockholm, BTW.   :)

Mark Olson wrote on May 31^st, 2014 at 11:56pm:

A strong cup of coffee definitely helps me with my shadows. Love Stockholm, BTW.   :)

Yes, lots of caffeine + magnesium keeps the shadows manageable right now.

Went for a short trip this weekend and was seriously worried about getting a hit during the flight, but luckily did not. A whole lot of attacks during the weekend though, emptying the O2 tube I brought + had to go to the E.D. three times :/

How do flying/travelling work for other CH:ers? Couldn't find any threads about it.

I am curious about this too.  I just took a new job that requires a lot of travel.

"... Have you tried slugging back a Red Bull energy drink?"

I tried this today. Can't say it helped noteably better than coffee.

Oh, and what about the Vitamin D3... ? I don't understand the "IU" that everyone is writing about. I can only find pills with about 20 micrograms of D3... How much is that in "IU"...?

:-?

Hey Cartographer,

If you map out (pardon the play on words) the conversion factor for microgram (µg or mcg) to International Unit (IU), you'll need 250 µg of vitamin D3 to get 10,000 IU. 

The IU is a measure of biological activity or effect.  As the conversion factor of mas (weight) to biological effect varies between vitamins, the IU is used for the purpose of easier comparison across substances.  Accordingly, biologically active substances like vitamins, hormones and some medications are measured in IU.

The following chart illustrates the 25(OH)D response to dose of vitamin D3.

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As you can see, 20 µg of vitamin D3 works out to less than 1000 IU and is too low to produce the kind of 25(OH)D response needed to prevent your CH.

You'll need to see your PCP to obtain a prescription for 5,000 IU vitamin D3 capsules or you can order them over the Internet from iherb or Amazon.  When you do see your PCP to discus this regimen, you need to ask for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.

The normal reference range for 25(OH)D is 30 to 100 ng/mL, (75 to 250 nmol/L). Nearly every CH'er with active CH who has gone in for this lab test has had their results come back indicating a vitamin D3 deficiency.  I'll wager you a Gravlaks dinner you are vitamin D3 deficient...

Take care,

V/R, Batch

I really tried to come up with a good Stockholm Syndrome joke. I like to laugh about CH when I can, but beyond calling it my pet, i can't identify with the monster attacking me each day. It sucks!

I'm a cluster victim for three years now. My cycles come about month on month off. I've had them last as short as 3 weeks and as long as 6. usually the off time is about the same as the on. It pisses me off when it is shorter.

Keep moving forward!