I have been fighting the beast for almost three months now with no remission in sight.This is my first episode and Im ready for it to be over.I have been on the D3 regimen and 360mg Verapamil for 3 weeks and it has helped with the severity of the attacks but I am still getting them especially at night.Ive been prescribed 300mg of gabapentin to help me sleep but it makes me a zombie for the next 10 hrs.I cant work like this and have been out the last two months. Each week the beast changes and now Im having some attacks on the left side,too.Crazy.I may have one day out of the week that I'm clear but the rest of the week is unpredictable.I was hoping this would start winding down by now,scared.I'm looking into a headache clinic at Duke since there is not one  in my home state,Virginia.Those of you reading this who are long time sufferers(god bless you),when did you know you were chronic?Any help is appreciated.
Ricky

Hi Ricky,
Have you tried Melatonin 10-15mg before going to bed has
a good record stopping those night attacks. You can buy
it over the counter at your local pharmacy.

Hoppy.

I tried the melatonin(10-15mg fast and slow release)for a week with no relief so I stopped taking it.Thanks for replying,Hoppy.

Hey Ricky,

I've been chronic since 2004...  Pain free since Oct. 2010 when I developed and started the anti-inflammatory regimen with 10,000 IU/day vitamin D3... 

That said... I'm still a chronic CH'er...  All I need do is stop taking this regimen and in 7 to 8 days my 25(OH)D reserves deplete to the point where the beast sneaks back and starts gnawing away on the back of my eye... 

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A very nasty critter as I'm sure you'll agree...

Restarting the anti-inflammatory regimen with a 50,000 IU loading dose sends the beast high-tailing out of town.

On the bright side... knowing you're chronic takes all the guessing out of when the next episodic cycle is going to start and how long it's going to last.

Take care and please keep us posted.

V/R, Batch

Hi Ricky and Welcome to Clusterville

  I'm a "head trauma" CHer (I think I read somewhere here years ago that's about 16-20% of us).  Hit my noggin 1/01, attacks started.  By the time my wife found this site for me, was having 6-8 attacks daily, sometimes 3-5 at night, after 13 months mis-diagnosis, non-working meds.  This place gave me a name-for-the-pain and the info/ammunition to take to my doc and finally have some control over this beast of ours.

  My first preventive was also Verapamil, which started to have some effect when I reached 240 mg (first pain free day in over a year).  Got as high as 480 mg, then went to 360 mg as maintenance dose (many use much higher doses, often combined with other drugs such as lithium.

  My abortive for all this time was 02.  Used at the first sign of attack, with the proper mask and flow rate, could kill most attacks in under ten minutes . . .. but it MUST be used early-on in the attack.  CHs ramp so fast, minutes matter!

  Good news is that I've now gone 19 months PAIN FREE using the D3 regimen.  Bad news is that I had to stop same last Wednesday due to upcoming surgery 8/30 . . . but I'm stocked up on 02 and energy drinks (I like Rock Star orange) and have a couple of gel packs in the freezer . . .so I'm as prepared as I can get.

  Glad you're seeing a headache specialist . . . and hope he is familiar with clusters.  If you haven't already got it, get a script for 02.  Tell your doc you know insurance probably won't cover it, but you're willing to pay cash . . . .02 is CHEAP (I pay $10 per "E" tank which will abort 6-8 short/minor attacks or two major attacks.  An "E" tank will give you 45 min of 02 at 15 lpm).

  If you haven't had them already, the specialist will probably want to run a CT and/or MRI to make sure you don't have other (possibly more dangerous) condition(s) which can mimic CH.  If it is CH, the tests will come back "normal".

  Read, read, read . .  . and ask any questions you might have . . . and make copies of relevant documents on this site to take to your doc (especially the PDF file (Meds, Therapies) that Bob Johnson usually has at the bottom of most of his posts.

  Be Safe,  PFDANs

      Richard

Really good advice so far. Please take it to heart. You asked about knowing when you were chronic. That is nearly a useless piece of information since you're main problem right now is finding an effective means of managing the beast. Chronic or episodic, the pain is the same as is the need. You will sort out your cycle in time, or you will discover you need to battle the beast 24/7. In any event, you must take charge of your own pain.

BTW, Gabapentin is an old intervention that is pretty much useless for CHs. I was up to 940mg/day and it did nothing but make the world fuzzy.

God bless. lance

Chronic is just a length of time. It means you've had clusters for one year without a 30 day break.

Thanks for all the good info. I have my O2 here with me and I carry a Monster(green) with me if I need to venture out. I just need to find the right meds and dosage to stop the attacks. My last MRI came back with a small mass on the right audio nerve.Neuro surgeon said its not related to the headaches.I was hoping it was so they can take it out and I would be pain free. I'm hoping the headache clinic can help,cause I'm starting loose it.Being out work is starting to be a financial strain and the type of work I do,I cant go in and leave if I start feeling bad.I'm worried I may not be able to work in this field any longer.Sorry that ran on,guess I needed to get that shit out.Thanks for letting me vent.
Ricky

Ricky,
Myself, I was in five year remission before the attacks returned this spring and summer. Having to wait two to three months to be seen by neurologist, so I had to instruct physicians what kind of prescription to write me. I started Verapamil at 240 mg, then 480 mg, and finally 720 mg before the attacks subsided. Now 2 months without one while being mindful of my triggers. I gave the Vitamin D a couple weeks, but attacks got worse and more frequent so I stopped and went for the high dosage Verapmil. I've read one can go as high as 960 mg, so it might be a route to consider.

For what it's worth and I don't  know how far this is for you but Dr Neil Pugach is listed as a headache specialist in va.beach