No diagnosis here.  Go see a Doctor.

            Potter

Hi Rhianna
Many of us sufferers self diagnose because General Medical Practitioners have little experience of CH and do not know as intimately as we do, the signs, symptoms and the PAIN!  This site has great info on cluster traits - see if your symptoms match up and then go, armed with as much info from here, printed out, for your doctor to see. 

DEMAND to see a neurologist/headache specialist and get properly diagnosed. The quicker you do that, the quicker you can get on with properly treating whatever condition it turns out that you might have.  You might be lucky and find out that you don't have CH but something temporary and easily treatable.

If you are diagnosed, then you have come to the right place. There are good people here who have immense knowledge of this affliction and if nothing else, you get to compete with each other about whose head hurts the most

Your doc may have recognized Cluster but, clearly, didn't know how to treat it. But, because there are so many, many dozens of headache types, etc., would strongly suggest you find a headache specialist--NOT any general neurologist.
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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.
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To give you some introductory material on Cluster, see the PDF file, below and print out the full article which follows.
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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]
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Much good information to the left (buttons). Start with the OUCH site and the many articles you will find.

Hope you stay in touch with us as your treatment developes.

The fact the doctor recognized cluster head ache is a good thing. The fact he prescribed pain meds as a treatment shows a complete lack of knowledge on his part. Short of sedating you to the point of blacking out, pain meds won't work for CH. You need to find either a neuro, who specializes in headaches, a general practitioner who is knowledgeable about CH, or a doctor who will listen to what you suggest and work with you on a treatment program. Most find good results using a 2 pronged approach.

1: A good prevent med. A med you take daily while in cycle..(getting headaches)...the goal being to reduce the frequency and the intensity of your attacks. I use lithium. Verapamil is a popular first line treatment, topomax also has a loyal following.

2: A good abortive. The attack is starting, now what? Your first line abort should be oxygen. Read the oxygen info link on the left. I can abort an attack in less then 10 minutes. (Done it twice already this morning...damnit! )

Imitrex injectables are effective but very expensive. Imitrex nasal spray is  cheaper and works for many. The pill form generally takes too long to get into your system to be of any help.

For now, grab a 4 pack of energy drinks. Rock Star, Red Bull, any containing the combo of caffeine and taurine. Chug one down at the first sign of an attack. many can abort or really reduce an attack that way. Stay away from alcohol, a trigger for many CH'ers.

Read everything on this board. In a very short time you will know far more about CH then your doc. This condition requires you educate yourself and learn to be your own advocate. We will help you every step.

Joe

Rhianna,

All I can say is INSIST on a high flow oxygen script, 15 to 25lpm, if your Doctor says no get another Doctor (easy for me to say) and read everything you can on this site on how to use it and what kind of mask to get (non rebreathers are recommended by most if not all). Preventatives have never worked for me though I am in the minority as far as that goes but I thank god and this site everyday for oxygen, I don't know where I would be today without it. Good luck and keep reading there are great people and great advice available here.

David

Hi Rhianna.  A general doctor usually will have limited knowledge of intricate headache conditions.  That is why people are suggesting going to a headache specialist.  People here have wasted thousands of hours and probably millions of dollars on stuff that doesn't work.  Pain killers don't typically work for people.

Clusters (CH) are somewhat hard to figure out your first cycle or first experiences with them.  Part of the charm of the CH is the predictable timing and sometimes the seasonality of the attacks.  One headache does not make a CH, but when you have one the same time each day and then they disappear 2 months later only to reappear 1 year later, then we have better information. 

So keep reading and keep observing your pain, triggers, timing etc.

Most people here have had to educate their doctors to get the treatments that work for most of us.  Many doctors won't prescribe oxygen but most people get relief.  Flow rates are higher than doctors understand will help. 

Many doctors give imitrex pills which tend to be too slow to work for a single attack.  People have better luck with the injectors. 

Caffeine and taurine, red bull etc, work if drunk right at the onset of an attack.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or is dedicated to the treatment of CH through natural substances and in my opinion shows the most promise.  You are not required to take prescription meds that your doctor recommends.  Check the side effects and ask people here what their experiences have been with specific drugs.  Always freaks me out and I would much rather use the Busters protocal.

Some people do hot showers or cold showers, ice, intense excercise etc.  Melatonin protocol for the nighttime hits. 

If I were you and I thought I had CH but maybe something else?? I would experiment with the easy stuff.  I would find the melatonin suggestions here, over the counter, probably safe and easy to get, and see if it helps.  If you are getting shadows or pressure during the day drink some caffeine and see if it helps.  And if I were new to this I would find a specialist as mentioned above and bring in printed articles from this site in case they are not so good with the CH you can push for your oxygen prescription.

Good luck!

--Shaggy

ps, don't get scared away by some of our, shall we say, "gruff'er" members.  We all care and want to see people have as many pain free days as possible

Awesome replies people.

I think this is worthy of a Sticky (Important Topics)

Rhianna,
  I'm afraid CH's are a condition you will have to fight, mostly on your own. bring some info to your Dr's office, and drop it off for him or her to review. I'm certian your next visit will be much more productive.

I'd suggest you try Oxygen alone first, before you give the meds a shot. The meds used are effective, but are serious medication and have serious effects, good and bad.

With O2 alone, 97% of my CH's are reduced to a mild-bad "normal" headache for 10-30 mins, then gone. After years of raw CH pain, its a walk in the park. Plus with all I've recently learned about CH, thanks to this awesome site/forum and the incredibly helpful people here, I know I'm not alone.

Remember that the pain is temporary, as excruciating as it gets, it will go away. It may help you from getting too discouraged.

I would find the doctor who mentioned CH to you, and give him/her a big hug. He or She has, most likely by the sounds of your symptoms, has brought you a world of relief.

Remember that Dr.s are just people, not walking encyclopedias. For the same reason there are "specialists" there are GP's. You wouldn't ask a podiatrist to give your eye's a look, despite his/her Ph.D.

Contrary to common assumption, a Podiatrist who, while examining your foot, notices you have glaucoma, is a good doctor. lol. sorry for the analogies.

Rhianna,
   Until you get a chance to get to the docs and get your O2,  try using ice or heat(I use a frozen bag of corn, or peas).  And try to use a controlled breathing technique, so that you dont freak out and make the pain worse.  Try and stay calm, as hard as that sounds, but getting very upset during a hit will usually make it worse.  Try to focus on your breathing, and breath slowly all the way in and all the way out,  then speed up your breathing and try to think of something else than the pain.  I used to count my steps as I walked and walked and walked and walked..............

These are just a few suggestions along with the melatonin, Red Bull, caffiene etc that you already received from everyone else.  They are to help you until you can get to another doctor visit and get some real bullets in your arsenal.

Good Luck,
christine