Hello and welcome, I would try to find a neurlogist as I'm only 17 and get chronic cluster headaches. Finding a neurologist was the greatest thing I've done.

First,  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. Follow this chain:    CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Second, since you do not yet have a solid Dx from a headache specialist, DO NOT assume that Cluster is the problem. DO NOT start using he various meds/treatments which you will have suggested to you here.

Find a speialist and work with him and his treatment plan to give his efforts a fair chance, uncomplicated by competiting approaches.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. 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.

5. 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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Third, you asked for some basic info.


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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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  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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ASSUMING, the specialist coinfirms Cluster as the problem, print out the PDF file, below. It's a good tool to use in discussing options with the doc.

Im a lot over tired and didn't explain the situation very well. He was diagnosed by a neurologist in the hospital with CH. Also reading many post from this site pretty much describes exactly what he has gone through. I feel like our primary MD seems to be more open to trying different options. I felt like the neurologist left us hanging by not even giving paper work on CH or what to expect and different options. I found a recommended headache clinic on the OUCH website that I will be making an appointment with on Monday.

Hello, Norma, and thank you for representing your son. He is going to need a lot of support, largely because CHs are so poorly understood. While it is true CHs may cause dilation of the blood vessels, new reports on the effectiveness of drugs like Imitrex indicate it is neuronal and not vascular activity that does the trick. That aside, the good news is you do not have to understand the beast in order to manage it.

Working with the medical community can be very frustrating since they actually know so little about CHs. You will need to become your own "expert" and the advice you receive here on various interventions is golden. It won't all work, but we pray some of it will. Read, and take notes, and discuss these with your doctor. Management is possible even if there is no cure at the present time. And ask any questions, any at all. Good luck and God bless. lance

G'day Norma,
Thats a tricky one. I would imagine we are all different, but for
me, my cycle always came in the Spring and Fall, and then at
the end of that season, without thinking, a couple of days would
go by pain free," then i got to know the Beast had gone." Until
he awoke next time round.

Hoppy.

PS, with so much to take in at one time, i was wondering if you
noticed on Richard's thread he mentioned alcohol as a trigger.
In a lot of CH sufferers this is a real no no, especially beer.
Another tip, during an attack is to have a rearly hot shower.
Also ice blocks or frozen Peas from the freezer applied to the
temple and the back of the neck can sometimes abort an attack.
You can also try this one to abort CH inhale deeply through your
nose for 15-20 min's, Joe likes to do this with his head in the
freezer, or if you are out and about use your cars aircon vent.
Hoping these few tips can help Nick lesson the pain and the
duration of the attack.

Thanks again Richard and Hoppy I can't say that enough to all of you who are responding and giving me such good advice! I ordered the O2ptimask and printed out the flow instructions for the Dr. should have all for o2 by Monday. I have taken so many notes from this site and all your suggestions to discuss with the Dr. I'm also starting him on the vitamin regimen. Far as meds the preventative is depakote 250 mg daily, immetrex (sp?) shots (as needed) and torodol every six hours but we rarely can make it to six hours before he needs one. He tries to hold off on the shot until he is at his limit because he feels so crappy after. His appetite is just gone and he has terrible stomachaches, is this side effects from the meds? What your opinions on the best preventive?

  I can't comment on the prevents you mentioned, but others will be along who have experience with them and their side-effects.  I used Verapamil to good effect for a couple of years.

  Once they've mastered aborting with 02, most save the trex for situations where having an 02 tank immediately available is not  possible, plus you're not supposed to use more than two (shots) a day and insurance companies frequently limit this very expensive drug.  See the "imitrex tip" . . . link on left . . . which can allow him to abort more attacks with the same script.

  I couldn't use Imitrex as I have some artery blockage and cholesterol issues which prohibit me from using this major vaso-constrictor.

  Make sure you advise your doc he's starting the D3 regimen.  I have no idea if the prevents mentioned would affect positively/negatively the effects of the regimen or the effects of the prevents. . . . there will be someone along with more info I'm sure.

"Best preventative" . . . for me I have to say the D3 regimen, as I'm now painfree for 1 1/2 years after ten years of dealing with the beast.

    Be Safe,   PFDANs

      Richard

Norma - Here is what worked for me. 

I am new to the Beast as well - We had our first date the Saturday night before memorial day this year.  I paid for it ! Doh!

Go to his PCP - Ask for Verapamil.  Its the most recommended preventive out there.  Also ask for a Predisone taper (80mg over 12-14 days).  The Predisone gave me immediate relief for about 4-5 days which saved my life and my job!  This will allow the Verapamil to build up - they will most likely start him at 80mg and taper up every 3-4 days until he gets to 240mg.  From there give it a few weeks and see how he does.  He may need a ECG and to check his BP regularly to make sure it doesn't get to low, but its better then the headaches IMO.  Also look at Melatonin at night - I take 15mg but he should start 5-10 to see how it affects him.  Helps avoid the late night wake up calls.  The D3 will help too, just give it time.  Make sure you space out the Calcium and the Verapamil dosing by 8-12 hours as they can interact or cause issues.  During the day, see if he likes energy drinks like Rockstar, Redbull or Monster (anything with caffeine or taurine in it)- When he feels the pressure or the pain coming chug back half of one, then sip the rest of it casual.  I like mine cold as the cold seems to help the pain.  Sometimes this will head off the attack or at least make the shadows fade.

I'm not a Doc but a fellow sufferer sharing his experience.

Best of luck to you both and keep us posted on the progress.

  Good advice Lance

  Norma . . . were you successful getting the 02 script from the doc?  Do you think he's going to accept any of the material available here?

  Let us know .  .  . there ARE other ways to get 02 available to Nick.

   Be Safe,   PFDANs

     Richard