I have stumbled on this site from several searches before, but never read it in depth. I will say after reading the D3 treatment, I am going out tomorrow to buy everything. I have been having an awful episode going on 4 weeks now and am starting to fear for my job. My CH's seem to like to come at 2am. Very disrespectful of them.

However, I seem to notice a pattern with the treatment of our condition by medical professionals. I can not put it politely, as it's a little too painful for me. They simply appear to be idiots. A 15 year old with Google can figure out more about Cluster Headaches than I have ever had a doctor know. How can they even pretend to try to treat them when they can't even do a simple wikipedia search to find out what they are? If I have one more doctor or ER person think I am just looking for "pain meds" I'm going to scream. Dear God I don't want pain meds. I have never ever found a pain med that did a single thing to a CH. I picture it like Hulk in the Avengers movie, where he takes that pain medicine and bangs it back and forth on the floor. Puny pain medicine!

I just really don't understand it. I work in a hospital actually, on the computer systems. So I am near doctors alot. I certainly would not try to tinker with an important application without at least googling the damn thing before I touch it. We are dealing with living people here. Don't you think they could at least take 5 minutes to look something up before trying to treat you?

I guess this is just a vent. I gave up on sleeping tonight and realize I'm just gonna fuel myself with coffee all day so I can work. Missed too many half days recently just trying to get some sleep after being kept up til 5am.

Just fyi, I know I have tried:

Verapamil
Medrol Packs
Kenalog shots
Toradol (pain med - this was funny, in a doctor was clueless            kind of way)
Strong Coffee (by far my most effective, if caught at beginning of shadow)
Kudzu (currently trying this. Not being as effective as I hoped)
Melatonin


Mine are episodic, almost always hitting in spring or fall. Normally they are nice and hit around 1030am or so. This particular monster is a bit more evil. Hard to drink coffee at the shadow if you are asleep for it.

I have always wondered what caused these..just clinically speaking I guess. I did have a concussion from being hit by a car at 12, and these started for me at 13. So perhaps that?

I am also high functioning Asperger's. Both of my sons are as well, with one being truly Autistic. Hopefully no link there. Would rather the accident have caused it, so maybe it's not genetic. I would rather suffer this three times as much than see my sons have it too.

Oh I didn't mention, I'm 39 now. So have had these for 26 years now.

Hey Jason,

You're correct...  too many physicians and neurologists are unfamiliar with the standards of care recommended treatments for cluster headache and other trigeminal autonomic cephalalgias (TAC)... 

This is a real problem, and it's going to take a long time to fix it... 

In the mean time, see your PCP for a script then trot on down the hall to phlebotomy and ask for the lab test for 25(OH)D.  That's 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. 

Unfortunately too many physicians will interpret your lab results as normal with a 25(OH)D serum concentration of 31 ng/mL.  That may be true for rickets and osteomalacia but it wont do squat diddly for cluster headache.

Results from the online survey of CH'ers using the anti-inflammatory regimen with 10,000 IU/day vitamin D3 indicate 68 of the 84 CH’ers (80%) who completed this survey experienced a significant reduction in the frequency severity and duration of their CH. 66 of the 84 CH’ers (78.5%) experienced a 24-hour pain free response and 60% have remained essentially pain free of their CH.

Several of these CH'ers had their 25(OH)D tested before starting this regimen.  Their average serum concentration of 25(OH)D was 28.7 ng/mL, (71.75 nmol/L).  CH'ers who experienced a favorable/pain free response to this regimen and then had the test for 25(OH)D averaged 81.4 ng/mL, (203.5 nmol/L).

Granted this ongoing survey isn't a gold standard RCT (randomized, placebo controlled, double-blind, crossover clinical trial).  However, if taken at face value, these results suggest a causal relationship between a vitamin D3 deficiency and cluster headache.

Moreover, by elevating the 25(OH)D serum concentration to a range of 60 to 110 ng/mL by taking 10,000 IU/day vitamin D3 results in an 80% response where CH'ers experience a significant (80%) reduction in the frequency, severity and duration of their CH or they experience a pain free response.

So there you go...  Please feel free to ask questions and do keep us posted on your progress with this regimen... because you're not going to find any reference to this survey anywhere else, but here at CH.com and a couple other cluster headache fora. 

Attempts to have the results of this survey published by the American Headache Society and the International Headache Society were rejected...  When we have at least 100 CH'ers complete the online survey... I'll resubmit the manuscript.

Take care,

V/R, Batch

Coffee can be very helpful to many of us.  I drink quite a bit of it as a preventative.  You might want to try slamming an energy drink along with the coffee at the first sign of an attack.  The taurene in the energy drink turbo charges the caffeine, giving a much quicker abort.

Also, you need some high flow oxygen 15-25 lpm minimum through a non -rebreather mask.  (The CH.com store on the left is a great source for the best mask.)  See the oxygen info button on the left also. 

Jerry

I tried O2 at work a few times (Cardio department was nice enough to just hook me up as I read it helped), but had mixed results. Based on that I wasn't real hip on spending a ton of money getting it in my home. I'll spend 20-30 dollars trying something new, but not hundreds on something that doesn't seem really effective for me.

Even working at a hospital my deductible is like $2500 a year. Insurance is just a ripoff at this point. I'm also diabetic and still hardly ever hit my deductible in a year to even have insurance help.

2nd day on the D3 regimen though - my fingers are crossed. They were nice and let me sleep last night. Was quite tired so truly appreciated it.

Hey Jason,

Thanks for the update...  Again, the odds are in your favor you'll have a favorable response to vitamin D3.  A night of pain free sleep is a great start.

Have you gone in for the lab test for 25(OH)D?  It can be very telling... even if you've already started the anti-inflammatory regimen.

Take care and please keep us posted.

V/R, Batch

Stick with the D-3 Jason, I'm 53, a 35 year episodic sufferer, coming up on 3 years of pain free time with the D-3. I was also a spring/fall sufferer. And docs...yeah.....to say it can be frustrating would be an understatement! At least you're male..the poor women have it even worse because "everyone knows women don't get clusters!" The sad fact is we have a rare disorder that doesn't kill us so no one is all that interested. Stick around here, at least everyone here understands what you're going thru. Hope the D-3 does the magic for you it's done for me.

joe

Well unfortunately I'm on day 7 of the D3 and have not had any significant difference. I could almost say they have lessed in pain, from hitting 10's each time to hitting 8's instead, but it's hard to say if that isn't just the variation in them. Besides normally my bouts only last a few months and I'm on week 7.

Going to keep trying, just a little depressed as I was very hopeful. Am seeing a neurologist tomorrow that is going to finally prescribe O2 to keep at home for the next month at least so I can use that at the start. Found out I had apparently done the O2 incorrectly before - using them it in the middle of a cluster instead of at the onset.

Jason - Hang in there. It took me 2 months before my serum levels got into the therapeutic zone.

I take 10,000 iu / day right now to maintain my levels, but a year ago I was taking 20,000 iu / day with a loading dose of 50,000 iu once a week.

Jason, I want to thank you for sharing with us that your previous experience with O2 was different from what we recommend. Our recommendations come from lots of trial and experimentation and when done in just the way we suggest, can be a huge help. All of it matters: flow rate, mask, hyperventilation...all of it. The D3 regimen can be a preventative but there's no reason to deal with the pain of a hit while your body adjusts. I think you'll find O2 is your best friend. God bless. lance

Hi Jason,

Guess I am quite lucky with my neurologist then… She immediately diagnosed me when I first visited her, seems quite knowledgeable on the different treatments and symptoms (as well as on the psychological and social effects), and even provided directions to the ER staff in the hospital on how to recognize and deal with us – with the very clear order to take us seriously and give treatment very urgently!

I also have the experience that the problem with the nightly attacks is indeed that, by the time you are awakened by them, it is too late for guns, and you need to switch to missiles to slaughter the Beast.

For me, using oxygen then tends to help to ease the pain after about 15 minutes, but only to come back much harder about 2 hrs later!

So now, when awoken at night (which is almost every night), I immediately grab the Imitrex (which is laying ready within hand-reach), so I only miss out as little as possible on my valuable sleep…