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.

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.

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

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.

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…