Hello all,
Thought I'd introduce myself a little here

I'm 32 and been suffering from cluster headaches for about a year now.  They initially started when I would consume alcohol, so I eventually stopped, thinking that would alleviate the problem.

It did for awhile, but I started having them again.  For about the past month, I will get them pretty much every day, sometimes twice per day.  They are usually randomly timed, as opposed to some who experience them at the same time. 

I usually get a little "tinge" just before they happen, and if  take some pain pills immediately, I can sometimes prevent them.e  If not, they come on and last for about 30-45 minutes.  During this time, it s excruciating and I am unable to perform any activity.  Can't sleep, etc... or I would happily go to sleep.  Sometimes they start while  am asleep, and they will wake me up.

I usually get a bag of ice and put it on my left eye, which is the side they always occur on.  Maybe the ice just numbs the pain a little, but it's 'obviously not comfortable to have ice on your eye either! 

I have not been "diagnosed", but I am 99% sure they are cluster headaches based on my research:  Always "behind" the left eye, eye will droop and water, left nostril will water also and become stuffy. 

Man, I used to discount it when people would complain about migraines, but for the love of god, this is such a horrible pain. 

I really hope they go into remission soon, because I am looking for work now, and these basically make me "disabled" to a certain degree, especially since they can and  do occur and random times. 
I was actually awoken today by one, I immediately took some aspirin and got my ice bag.  Then paced around for about 20 minutes until it lessened a little.  I can still feel it a little now, but it is nearly finished. 

This is about the 15th day in a row, I got two yesterday at work.  Getting these everyday is beginning to take it's toll, and definitely impacting my life negatively, in addition to the pain.  After a really bad one, I'm so drained that I just want to sleep.  So it's not just "during" the episode that affects me, it's everything about them:  always planning ahead about "what if I get one...."?  I know OTC pills don't really work all of the time, but I keep aspirin near me at all times. 

Just thought I'd share, as I understand what we are all going through and the severity of these darn things!!

Or if anyone has their own methods for making these somewhat bearable;  I'll be reading your posts here for information.

Regards

Hello Ramses,

You are very welcome to CH.com. Whether you are suffering from Cluster Headaches or not, all headaches are horrible, so we understand what you're going through.

It is essential that you go to a Headache Specialist to determine exactly what is causing your headaches. You will be given a number of tests to eliminate more sinister conditions and once you have a formal diagnosis you will be able to get it treated.

There are many conditions that mimic clusters, so diagnosis is vital.

If you let us know where you are in the world we may be able to point you in the direction of a trusted headache specialist.

In the meantime, take the Cluster Quiz above left.

Keep well and keep us posted.

Peter.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Big mistake to diagnose yourself!
Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Bottom line: until you start seeing a doc with training and experience with headaches you don't know what you have. Cluster-LIKE headaches is a big diversion from getting good greatment. There are many disorders, some quite serious, which appear to be Cluster but are not headache disosrders.

Hi Ramses and welcome

As Bob and Peter have said what is critical for you getting the right treatment is to get an accurate diagnosis as there are many potential causes of the symptoms you are experiencing. This is why we always direct people to a headache specialist as part of the diagnostic process is ruling out all other potential causes of the symptoms.

The journey you are on in getting a diagnosis is one we've all gone through so we totally understand what it feels like to experience severe head pain and the impact it has on our lives.

Are you keeping a headache diary with details of when you get a headache, the symptoms, time, date, duration, how long it lasts and potential triggers? This can help with the diagnosis.

Hope things progress with you and in the meantime read up all you can on headaches as knowledge is important in this area.

Thanks for the comments;
I'm in Omaha, NE
However I do not have any kind of health insurance coverage and cannot afford anything right now.  I just have to manage the headaches as best as possible until I receive some sort of coverage or my financial situation improves.
I'm sure the stress of it all is a factor...
Thanks

Ramses,

Take the Cluster Quiz anyway and read the section "follow on" at the bottom of the quiz page. Try the 30 question quiz as well.

Let us know how you get on.

Peter.

Call you local hospital(s) social service and inquire re. local low cost/free medical service. Hospitals often offer free/low cost service and/or can direct you to local service in the community.

Hi Ramses
Try this..........
At the very first sign of a CH, when you get that "tinge", gulp down a redbull really fast. Don't wait for the pain to ramp up. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do - Rockstar, monster etc.

It doesn't work for every one, but lots of folks here say it helps a lot. Easy to get, easy to carry, and inconspicuous, so well worth a try.

Hi Ramses and welcome to Clusterville

All good info above.  You nee to plan on seeing a doc NOW for when you get the opportunity to do so.

Start a Headache Journal today.  When you get hit at night, or feel him coming in the daytime, make a mental note of the time.  When its "whooshed" away, check the time again.  My notation for a night hit might be;  3:30 am, Kip 8, RS, 02, ice, 20 min. (time of hit, level of pain using the Kip scale, method(s) to abort, length of attack).  Notation for a day hit:  2:15 pm, Kip 5, 02, 10 min.

When you do get to see the doc, bring your journal and a copy of the Kip scale.  Docks like paper.  When I first saw my current GP, I gave him a copy of the  recommended  treatments (abortives and preventatives), and a copy of the Kip scale, my history and use of 02.  His reply was, "you obviously know a lot more about these things than I do . . .  I'll be willing to consider any avenues you want to pursue"

To continue in putting together a "package" . . . .Get a yellow highlighter and copy the Cluster Traiits, Cluster Quiz, Kip Scale . . . .and then highlight everything that pertains to you.  That's what I did with my doc after 12 months mis-diagnosis, non-working meds . . . and I finally started to have some control over my life with 02 to abort and Verapamil to help reduce frequency/intensity.

You already know alcohol is a trigger (was for me too) .  . . try and identify as many as you can.  For me it was alcohol (any form), exhaust fumes, petroleum products like carb and brake cleaner. 

Forget the aspirin and pain pills.   Before I came here and got a name-for-the-pain, I would have a beer, feel an attack coming on and down a couple of Goodies Powders . . .  I thought they were helping because often they would cease in 20-30 min . . . nope .  .  . they just ended.  All I was doing (using 8-10 powders a day) was eating up my stomach lining.  Pain pills same thing, only they can bring on rebound attacks. 

Read, read, read . . .  copy info . . .  maintain that journal.   Ask anything.

  Be Safe,

   PFDANs.

     Richard . . . . pain free on D3