Hello All,
My episodes always start in the middle of Summer, the middle of July. When they first started I was convinced it was a sinus infection. My doctor sent me to an ENT who did an MRI and found major blockage in my upper left sinus. He performed the surgery, which almost killed me because of a mistake by the anastesiologist, I was good for a whole year, then the pain returned so back to the doctor I went explaining to him that the pain is the same as it was and he looked at me like I was imagining things so he suggested a dentist.
The next thing to be removed was an upper molar thinking it was protruding into my sinus cavity, no help...
Back to the ENT explaining to him that the pain is still there. He says the MRI is clear and I am suffering from Migranes because of the intense pain and wanting to be in a dark quiet place while going through an attack, I wasn't convinced.
I went to a new ENT, he finds a bone spur in my sinus that he eventually removed. Again I am good for a whole year... the pain returns. That was this year after drinking a few beers.
All the time I tried to explain to the doctors that it ALWAYS happened after drinking alchohol. Without sounding like a blazing achoholic I subtly mentioned this. They acted like they've never heard of this symptom! Why don't they know of this painfull syndrum that we suffer from?
Anyway, thanks to this site I am finnaly diagnosed and on the D3-Fish Oil regimine for only a WEEK! I still have shadows but I am sleeping through the night and I actually know what the heck is wrong with me! I can't tell you how GOOD it feels to know what I am up against!  [smiley=applause.gif]
Thank you all for being here and I hope you have the same success as I am having with the D3.
Btw, I read on here about the knot that forms in the back of the neck when going though an episode, so I experimented. At the base of the scull there is a knot on both sides on the back of the neck. Massaging these 'knots" releived my headache and every time I feel one coming on I massage this knot.
This has allowed me to return to normal on many occasions. I am not saying this will work for anyone else but anything that relieves the pain is good right?
It's summer here in PA and I will have some beers and lounge around the pool with the family thanks to this site and all of you!  ;D

Good luck,
Rod

Hi Rod,
To answer your question about why doctors are not aware how to properly diagnose CH's kinda boils down to the fact CH's is an incredibly rare neurovascular disease. 

Because so very few people are afflicted, it does not make financial sense for schools, hospitals, insurance companies nor pharmaceutical companies to invest dollars into research and development, education, etc.  The amount of education about CH's these medical professionals receive is bare minimum and often outdated treatment protocols.  Unfortunately for people like us, we often are misdiagnosed and suffer.  Many of us have reported similar stories being misdiagnosed from ENT's, dentists, eye doctors, etc. 

A qualified headache specialist is always best.  Good you got the MRI to rule our anything else that may be going on.  Alcohol is certainly a trigger for most of us and we have learned when in cycle, it is not wise to drink.  Glad to read the D3 is working for you, keep it up! 

Read as much as you can about CH's and document a headache diary to learn of your patterns such as what you wrote...same time of every July, etc. 

If the D3 doesn't work as planned, arm your intelligence with a complete understanding of Transitional, Preventive and Abortive treatments.  All of the info you could possibly want is here on this website, including people who truly understand your pain and your suffering. 

Pain free wishes and welcome to Clusterville ;)

-Gregg in Las Vegas

Hi, Rod.  I'm new to the site, too, but I have found it extremely helpful in just a short time.  I am surprised that you haven't sworn off the beers, but maybe I'm just more sensitive to them than you are.  I've gotten myself into my current cycle by drinking 5 or 6 beers after avoiding all alcohol for a year.  I was having great results by staying off the beers (which I sorely miss) and taking 10mg melatonin at bedtime.  After a year pain free, I slipped up and fell off the wagon.  Been paying for my experiment dearly for the past month, but I've started the D3 regimen and have been successfully warding off the worst of attacks by swigging down a caffeine/taurine energy drink at the first sign of trouble.  Well, I just wanted to say hi and wish you the best of luck.  There are some extremely knowledgeable folks here who seem genuinely inclined to help.

Hey Rod, Fstub,

Pop a 50,000 IU loading dose of vitamin D3 on top of the daily anti-inflammatory regimen to speed things up a bit with respect to building your 25(OH)D reserves...

After you've been pain free for 48 hours straight (no shadows either), you should be in good to go...  At that point you should be able quaff a brewski or two without fear the beast will come a knocking...

Take care and please keep us posted

V/R, Batch

rod,
            I was diagnosed about 3 years ago, but its only been the last 12 months that thev'e been full blown.
in looking back over 25 years, 3 times I had to give up beer, because I would get a sharp headache before ide finished my first glass, after a week of this, ide stop drinking beer.  this happened as I said 3 odd times over the last 25 years. i'de have a year or 2 off the beers, for fear of that headache, then ide start dinking it again and i'd be allright for another 4 or 5 years and then it would happen again.  and there were no other ch symptoms.
so I believe ive always had ch's but it never reared its head with any full on headaches, only periodically with beer being the instigator, the headaches lasted 15 minutes and never got any worse than a 2,  but it was a cluster head ache albeit low level.  now I love a good old frothie,  but I haven't had a beer in 10 years.
im going to try one once this cycle departs and ive well and truly got the regime inside me, but just thought ide share that............
colin

That's great news Rod, 3 years pain free on the D-3 after over 30 years of episodic CH, I'm staying on the D-3 for life. Hoping it works as well for you.

Joe

  Hi Rod

  I'm now 19 months painfree using the D3 regimen, after being chronic for over ten years.  None of my (formerly) guaranteed triggers (alcohol, exhaust fumes, solvents) have any effect (CH-wise).

  Look forward to the rest of summer.

    Be Safe,  PFDANs

       Richard

gee, im looking forward to my "former" triggers being a thing of the past !!!
   that will be a happy day when I can have a quite beer with friends, without fear !!!

regards
colin