Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
===========
This is not a simple area of medicine. There are so many types of headache that we strongly encourage working with a headache specialist.

To give you a taste of this complexity, look at this link to see how many disorders can mimic Cluster, disorders which can be quite severe.

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
========

One of the recurring problems folks report here is spending years trying to treat themselves, only to run into deadends and/or to work with docs who lack any working knowledge/experience with complex headache disorders.

Simply, we don't know you, your medical history; we are not physicians; it would be unwise for you to accept our diagnosis and unethical for us to offer one.

We have a great deal of useful information to share about coping, treating Cluster. But get the first step completed.....

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
===========




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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]

What they said!

A warning....you're a girl....(I know, you already knew that!).......so most GP's will initially tell you if you have a headache it must be a migrain because you're a girl! If you're lucky enough to have a GP who is aware of CH, he'll still tell you that's not the case because you're a girl......and girls don't get CH. That's a myth from 30 or so years ago that we are still working hard to dispel.

I tell you all of that to repeat what Bob and Lance said. There is no substitute for a good work up, with a Headache Specialist Neurologist. But for now.......

When you feel an attack coming on, try chugging down an energy drink, Rock Star, Red Bull, any containing the combo of caffiene and taurine. Many can abort or at least reduce the intensity of their attacks that way. Stay away from over the counter pain pills, tylenol, ibuprofin, overuse of any of these  can result in rebound attacks. Be careful with the fioricet...high horsepower stuff with a high risk for addiction.

I know you're only 17....so you don't drink anyways... ....but avoid alcohol, a major trigger for cluster headaches. Also, marijuana, it's a major vaso dialator which is asking for a killer CH attack.

Start a diary of your headaches, what time they start, how fast they build, how high they build, how long they stay at peak, how fast they go away. Describe the pains location, it's type, throbbing, stabbing etc. List any triggers you've identified, how any meds you have used have or have not helped. So much of your eventual diagnosis will be found in these details.

If it is CH you have, this is your new second home! Please keep us updated on your progress.

Joe

Hi Eilnae,
You may have CH's  , you may not   

I ditto what others have replied in terms of getting a professional diagnosis.  It is always best to get professional diagnosis by running a series of tests that can help determine if you have CH's or something else that may be less or more serious.

If you click on the "Cluster Quiz" tab on the left side of your screen, you can get a bit of insight as to your symptoms as it compares to CH's.

Additionally, you can find a qualified doctor who understands CH's by methods previously replied to you.  Also, if you go the "OUCH website" tab on the left side of your screen, you will se a link titled "Doctors", click on that and find the area you reside.  There most likely will be a doctor listed from other CH sufferers that recommended that doctor.

Also, there is a tab on the left side of your screen titled "where we live" that you can locate others in your area or nearby where you reside.  Perhaps you could click on one or a few of their names and email inquiries as to recommended doctors.

I began suffering from CH's when I was 11 yrs old and am now 43 yrs old.  It seems like yesterday when I was a teenager suffering and nobody understood, so I personally can relate to your situation.  I've been through every imaginable MISdiagnosis wasting many years of my life suffering because no doctor was able to accurately diagnosis me with CH's, thus no proper treatment, until...I found this website back in 1999. 

At that time I read as much as I could and absorbed all the info that my hurting head could retain, asked plenty of questions from those here on this message board, received plenty of empathizing supportive replies and when I took the "cluster quiz" on the left side of the screen it was crystal clear and a comfort that I was able tofinally understand what was wrong with me all my life.  Yes, I "self-diagnosed" myself as a CH sufferer thanks to this website.

I followed some of the recommendations, printed off valuable info from this site, shared this info with a neurologist who was open minded to listening and willing to treat me for CH's.

The bottom line is you could self diagnose yourself, but there is a chance of error that really does need to be confirmed (or not) by a medical doctor who is familiar with CH's and is willing to take your case seriously.

Do not settle for those who are not familiar, nor a doctor who is not willing to follow recommendations of treatment such as O2 therapy at high flow rates with a non-rebreather mask.  Definitely read and print off the "oxygen info" from the tab on your left side of the screen.

Almost everything you need to know is available on this site.  There are many years worth of contributory posts, lots of studies and wonderful people on this site that will be supportive of your rare situation. 

Do yourself good by reading as much as you can so you can speak intelligently with your doctor.  The doctor will take you more seriously and is more inclined to help you if you can speak intelligently with your doctor.  So start studying the basics, ask questions on this message board, comprehend the replies offered to you and don't be afraid to vent when you are frustrated, in pain, etc.  We encourage each other to vent so that we can offer support to one another in times when nobody else seems to understand the pain you are going through. 

Here's to hoping you don't have CH's, but if you do, we 100% understand your pain and welcome you.