Hi all,
This is my first post.
I've had a week of fairly intense headache localised around my right eye (which is also swollen), which has resulted in me getting about with one eye closed as its slightly more comfortable. The eyeball itself is also tender to touch.
Lots of anti-inflammatories, 2 doctors visits, optometrist visit and a CT scan (clear) I've been diagnosed with cluster headaches.
I have read up on them on a few websites and I appear to have the symptoms EXCEPT the pain is not nearly as severe or debilitating as described by other sufferers. One website said they can get worse with time (obviously i need to avoid that) and the doctor has prescribed beta-blockers.
I guess my question is, does anyone here have cluster headaches that aren't totally debilitating? Or that started less severe?
I'm quite worried, but still questioning what the doc has said.
Any and all replies/advice, greatly appreciated!!!

Hi Jess,
And welcome, this is a new one to me, it's not presenting
classic CH symptons, after saying that there other headaches
that mimic CH. Your best bet would be to make an appoitment
with a neuro and take it from their.                                             

Hoppy.

hi jess,  im pretty new here, but I can tell you how my cluster headaches started.
4 years ago, my eye swelled and was tender to push on, along with a nagging headache which was constantly there.
then the whole right hand side of the top of my scalp was a mass off nerve tingling, saw to touch.  I went to the doctor, he ordered head scans,all clear, then a blood test which showed my inflammation was off the scale. so he prescribed prednozone.  still no real pain ch attacks. so for 12 months when symtoms reoccurred I simply went on a course of prednozone, anti inflammatory. until over a period of 2or 3 months the clusters were born. for 2 years I was given a variety of things, dabbled in verapamil, and had some imigran tablets. but xmas just gone, the true intensity of cluster headaches hit and hit hard.  I guess it will be different for other people, mine was a gradual build up over a few years.  but at the moment im on verapamil full time and trying the vit d3 regime and the attacks Im getting through this cylcle, (every three months) are half of the intensity of my last cycle and hopefully improving as I continue with the regime. ive learnt so much from other members here in such a short time.if you've been diagnosed, then please don't do what I did, refused to accept and was sceptical,  be proactive in your approach and take the advice of the many experienced sufferers here and get a good strategy plan and approach to OUR affliction.   unfortunately jess, they don't go away and from my experience do get worse over time, hopefully that doesn't happen to you, but, don't panic, there is help and if you get on top of things now, you wont suffer in denial like me.  I have a good neurologist and a good doctor, who is listening to what information im getting from this forum. for example she wasn't aware about how important o2 was for cluster sufferers, but immediately gave me a script when I learnt about it here and told her. she was also open to the vitamin d3 regime after I showed her the info from this site, so I think having a doctor/neurologist that's aware of what clusters are really helps.
a neurologist/headache specialist is the best person to be under, one doctor I first saw said that he didn't believe there was any difference between migraines and clusters !!
I hope this helps in some way, sorry for it a long post,  you are in the right place jess,members will offer you help and suggestions, we are all sufferers.
all the best
colin

Jess, your story doesn't sound unusual at all to me. Most of us only noticed we had something going on when the CHs became too painful to ignore. Few begin with full blown attacks right off the bat. They do, over time, settle into both a time pattern (hence the name clusters) and a pain level. If you are getting at these early, good for you. I am concerned though about the treatment. Is the beta blocker propanalol? If so I am not enthusiastic about its effects if you do have CHs. Also, it will prevent you from taking a more effective med like verapamil. Follow up, read everything you can especially here. And ask questions. God bless. lance

My first attacks started in junior high and lasted for only a minute or so and were extremely infrequent. I didn't get real attacks until I got into college.

There ared no tests--chemistry, etc.--to test for Cluster. Diasgnosis is largely by exclusion--of competing "claims".

Very common with newly emerging Cluster for the symptoms to vary in location, degee/type of pain, etc. for some months before settling into a firm/clear picture. Important to eliminate the competing possibilities, what the medical literature calls "cluster-LIKE" headaches--headaches which mimic Cluster but which are not primary headache disorders. (See:
Link to: cluster-LIKE headache= IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache")

AND roughly 50% of new cases turned out to NOT be Cluster.

Point being: patience working thru this stage until you have a firm handle on the diagnosis.

Most neurologists lack skill in treating headache and so find a speicalist is a good move.
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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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While working on a good Dx, read for you benefit:


Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Welcome Jess!  I hope you are right and your Doc is wrong that you have clusters- but I would still read as much as you can here and learn about Clusters just in case.

Welcome Jess. As you can see from the few posts in this thread, The Beast presents a different face to everyone. There is no one way these headaches attack at the start. I was one of the ones with Kip 10's early on. (There's a link on the left to the Kip Scale.) I was about 14 when I started mine. I remember walking down the corridors of my junior high school with my mother holding me by the arm, while I screamed in pain and fell every few steps because I couldn't see well with my eyes covered. After that, the headaches fell into line for me. A three-month attack in the spring and another in the fall. I spent a good deal of my youth -- roughly half of it -- either in excruciating pain, or tender from the after-effects and very tired from a lack of sleep. It didn't help my grades any. My family doctor had diagnosed me when I was 16 and since then I have seen a neurologist or two. They ruled out epilepsy among other things and I was tagged with the diagnosis of cluster headache for good. I tried oxygen, imitrex, ergotamine and a few things that made as much sense as tying my shoes backward. It wasn't until I started taking Verapamil that I got any relief at all. That was about 17 years ago now. It worked well until two or three years ago. (Be warned The Beast can change.) I'm out of my cycle right now, but I know there's another coming ... sometime. I just hope what I'm doing will mitigate it somewhat. There are things that will work well for some, but not others. What my headaches are like, may not be what yours are like. There will be several common aspects, though. Extreme pain will be one, if it isn't already. Good luck and best wishes. There is a lot of good advice to be had here, but not all of it will work for you. There is a lot of support here though and you are among friends who understand.

Jess,

Welcome, but I sure hope you don't belong here! 

I am in agreement fully with Lance and Bob, and hoping along with Bob.  Headache, although it is the third most common cause of loss of productivity, gets very little funding for research, and medical doctors actually get next to no training in dealing with it.  Even Neurologists have little actual training.  You need to find an HA specialist, or at least a Neuro who has experience with HA and specifically CH. 

It is not uncommon for CH to start out mildly and then intensify as time goes on.  Do some serious reading on here, and please feel free to ask questions!  An honest question is not a stupid question, although you may get some not so smart answers.  ;)  You have tapped the largest collection of CH knowledge and experience in the world.  Take advantage of it.

On the left is a series of buttons that take you to other resources.  Click the OUCH website button for a list of recommended CH knowledgeable Drs.