Hello,
  My name is Bryant. I have been suffering with Cluster Headaches for about 4 years now..Only been diagnosed for about 2. For the most part that diagnosis came from MY research, and telling my GP and finally a neurologist what I found and recorded from my own personal experiences and from what I could gather from online.
  One thing that until now I have been able to count on is the clockwork cyclical accuracy of my headaches. ALWAYS in the late spring for a 3-5 weeks, and ALWAYS at the end of the summer when its REALLY hot out. Usually 2-3 times a day during these periods. I have been lucky in the past to have only experienced what I would say is a between a kip 3 to the worst of kip 5.
  Now my question..sorry.. :-/ I was in remission for 8 months this last time, which is a little longer than i usually go. 4 days ago, I started a new bout, not at the usual time anymore and much more severe!! kip 8 id say, and the pain never seems to truely 100% be leaving anymore!! there is a constant dull sensation of pain like a Waiting tiger, that could strike randomly at any moment!! Is this normal? Should I just wait and see if it rights itself, or be concerned?..Sorry I talk too much!!   :-/ -B

Hi  Bryant
Personally I've found the "clockwork accuracy" to be a myth. CH may strike any time of the year, and any minute of the day. Nicknames like "alarm clock headache" just doesn't capture the true nature of CH. Though - even if CH manifests itself differently for each sufferer - there may be some statistical truths, but I believe it is a fairly common experience that the Beast is an ever changing one.

I too have experienced attacks that never really ends, as if the pain is squeezed out and distributed of a much longer time span. They stop after a day or two. Personally I've linked this to the use of Imitrex, but I'm not sure.

Be aware however that there are conditions that "mimics" CH.

Keep the spirit up!

TY for your reply Zeitgeist!!
  THe more I read the More I understand..And yet can one truely understand a beast that takes so many shapes and forms and never truely conforms to any. I have suffered from vertigo type migraines since i was 2. Then by the age of 13 those dissapeared. At the age of 18 I started having throbbing migraines. Those continued sporatically till the age of 25, then again disapeared. 3 years later I began having the one sided piercing burning pain behind my eyeball, and associative neck spasms. I am now 32. For really the majority of my entire life has been caught in one headache or another.. The toll this has taken on my family and friends has been unimaginable..and most times i wonder why any of them have stuck by me this long..I know its not my fault but..now..more than ever.. i just feel like a waste of space.. :-/

What Zeit said. The first 20 years of my cycles they were setting the atomic clock by my cycles and attacks, 2 cycles, spring and fall, then I hit my 40's and they went all over the place. 18 month remissions, 8 month cycles, the biggest constant for CH is its ability to morph.

Also what Zeit said, always check in with your doc when anything radically changes. There's always the danger of assuming ALL of your difficulties are related to CH when there's the possibility of  second condition.

Joe

Another vote for Z's comments. Variation is the norm and when you spend a few years reading here, it will become an absolute for you too.

You didn't ask, but:

Curr Pain Headache Rep. 2007 Apr;11(2):154-7. 


Cluster-migraine: does it exist?

Applebee AM, Shapiro RE.

Given C219B, Department of Neurology, University of Vermont College of Medicine, 89 Beaumont Avenue, Burlington, VT 05405, USA. robert.shapiro@uvm.edu.

The nosological boundaries between cluster headache and migraine are sometimes ill-defined. Although the two disorders are distinct clinical entities, patients sometimes present with clinical scenarios having characteristics of both headache types, but either do not fully meet International Classification of Headache Disorders, Second Edition diagnostic criteria for either disorder or have sufficient symptoms and signs to allow both diagnoses to be present. These occasions provide diagnostic challenges and include what is variously described as migraine-cluster, cyclical migraine, clustering episodes of migraine, cluster with aura, or atypical cluster without autonomic symptoms or severe pain. Patients with symptoms overlapping cluster headache and migraine likely reflect the inherent clinical variability in each of these two disorders, rather than distinct diagnostic entities in their own right.

PMID: 17367596

Thanks guys,
  I totally agree with zeit.And also thank you for that study on the blurry lines between the two afflictions. The problem is that each of my progressions towards this point have been markedly different. My vertigo migraines were like being on a tilt-a-whirl going 100 for 8 hrs straight.. made me nauseas, but no pain actually involved.. the second phase that started when i was 18, was a pounding throbbing headache thru out my head that alkso made me nauseas for 8-12 hrs. this last progression is a WHOLE different feeling.. it is def utilateral..always on my left side. my eye feels droopy, and i start getting a stinging sensation directly behind my eyeball. Within minutes it goes from a small poke to an intense sensation of having a hot poker stuck thru your eye socket..this on most occasions spreads to the back of my neck at the base of my head and into my left shoulderblade. In turn my muscles will feel like they are in a vise grip in my shoulders and can sometimes even feel more painful then the eye socket..As I said I have struggled with this for my whole life, but where I am today is 10 times worse than anything I had when i was younger

also wanted to mention that i have the runny nose..and my left nostril completely closes shut!! doesnt really run just swells shut!!...what are the other things this could be? Ive had 2 CT scans of my brain both of which were negative for any abnormalities or tumors..? what other things mimic these symptoms but are not CH?

Bryant
Cervicogenic headaches may mimic the pain of CH, and also the classical symptoms - red teary eye, droopy nose etc - all probably related to inflammation of the Trigeminal nerve.

Rune

Hey Bryant. You don't mention what you are doing to prevent and abort the hits. Are you on a med regimen, have you tried O2? I understand fully your despair, but we would all encourage you to add action to your knowledge. I can't predict what will help you, none of us can, but the treasurhouse of knowledge and experience shared here can certainly empower you to act on your own behalf. Get your doc on board and start attacking back. blessings. lance

-B, you said " the pain never seems to truely 100% be leaving anymore!! there is a constant dull sensation of pain like a Waiting tiger, that could strike randomly at any moment!! Is this normal?"

It sounds like what we call 'shadow headaches'. Normal? Yes, most of us get them. I have found drinking an energy drink like Red Bull can relieve the shadows. I like a shot of 5-Hour Energy Drink, about 1 oz, will kill a shadow in 4 to 6 minutes. But tastes like skunk pee.

Shadows can last a while and be rather annoying, but I find it helpful not to confuse them with rebound headaches. I was getting really bad rebounds when taking taurine with tryptans. They only stopped when I cut out the taurine / caffeine bombs. I would generally get 2-4 hours of relief, but the rebounds would last up to 12 hours. You need to pay really close attention to when your headaches start, the timing, and the type of pain. With all the meds we clusterheads are taking, it can be easy to loose track of what is causing what. :o

Hey folks!!
  Thanks so much for all your responses. I cant tell you how great it feels to have others who dont look at me like im some hypochondriac!! My doctor and Neuro sometimes even seem..unimpressed with this condition..
  To answer about meds, I have tried quite a few without real success. verapamil, Imitrex, amitriptyline, prednisone(kind of worked),even midrin(before cluster diagnosis). O2 has worked but the medical suppliers where i live always run out. Tho I do have some now, and yes it will abort my headaches but not if i dont catch them intime.
To tell you the truth the methods that seem to be working best for me of late are breathing techniques, with meditation, I add in a hot rice sock (which lasts 5x longer than a wet towel and i can usually get them to subside in 30 mins or so..I had a kip 8 this morning.. not on schedule...grrrrr..oxygen wouldnt touch it because I awoke maybe 1 minute before full onslaught!! Gonna call my neuro today and see if I can get in to see them or atleast try to get something else..oh well..keep on pluggin!!      :)

Dose levels are critical for us, and often we need much higher doses than is normally prescribed. So often we hear someone say, such and such didn't work for me, only to discover the dose was way below CH effective levesl. Take just one example: verapamil. Lable use puts it around 240mg/day. Many of us have found (with research to back it up) that to be effective for CHs it must be in a range from 360 mg/day to 960 mg/day. Same with other preventatives. It's also true of abortives, like O2. It can work at 15lpm, but is much more effective at 25+ lpm. And a nonrebreather mask is crucial. Sometimes it is a good idea to revisit the old standby meds just to see if there is a more effective dose that will help us. God bless. lance

I have the same symptoms as you. When I get a hit...My eye droops, runny nose, burning and those annoying and painful tightening in the shoulder at the base of the skull on the same side as the pain. I keep a zip lock bag of frozen water in the fridge. when I feel that shadow I put it on the pain side of my forehead and find the spot where the ice makes it hurt. keep the ice there and you will make that thing go away...hopefully. it works for me.

Headbanger - note that many people favor ice, but some CHer's say HEAT around the eye or cheek helps more.