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

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.

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

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

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.