Your last sentence is the key: a good headache clinic. There are many, many types of headache--yours tastes like one of the less common, exotic ones!

Might consider:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Take the CH quiz, left buttons, and see what comes up.

If a book is too much at this point, print this entire article. Good stuff.


 
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]

BarbaraD wrote on Jun 15^th, 2009 at 8:10pm:

Barbara,

It's "doddering".  

Regards,
Jim

Hi Grandma,

Glad you found us, cause I'm afraid you need to be here.

CH and Migraine are not the same, so don't think that not having had them in the past is indicative of anything.  CH from the latest studies appears to be neurological rather than physiological.

What you are describing sounds like CH  to me, but I'm not a Dr, and wouldn't try to diagose over the web if I was.  You need to see a good Neuro to rule out any other possibilities, i.e. aneurism, stroke, tumor, etc. 

When you find a GOOD Dr who is knowledgeable about HA, and CH in particular be sure it is one who will prescribe O2.  Check Batch's post on getting Oxygen prescribed in the Meds and Treatments board and print it out so you can argue intelligently for it. 

Until you can get O2 you might try an energy drink with caffein and Taurene in it.  They will often knock out a hit for me in just a few minutes.

Finally, don't be afraid to ask questions!  You are where we once were, new to this horror, and trying to deal with it.  Let us help you like others have helped us.

Jerry

Got home from work yesterday, made dinner, watched a little TV, dozed off and there IT was!  Took the advice and had purchased Red Bull....drank it down in a couple swallows.  I think that and an ice pack made IT more tolerable.  30 minutes and it was gone.  No more napping for me right now!  Had a little one around midnight but hadn't really gone to deep sleep.  The Red Bull and the thunderstorms made more a wakeful night but no bad HA.  2 weeks till appointment and then hopefully a referral to the HA clinic so that's the plan.  Thanks everyone!  By the way I have not been in a car accident and have not had a head injury of any kind.  I have full dentures (3 years now) so I don't think dental is an issue.  Last night was the first time that my right eyelid got all red & puffy but not droopy, that hasn't happened before, is that typical? Probably all the ice!  Have a good day and thanks for reading my posts.

Have an appointment with primary care because Headache Clinic requires referral and medical records.  Sounds like it might be awhile before I get to see someone who might actually be helpful.  At least the woman said that they have patients with CH, so they are aware.  Just might be something entirely different, anxious to get an answer.  HA's  are still 1 per day(although I have skipped a day here and there), always at night, have become shorter (15 min) and less painful (kip 5-6), still on one side, eye tears, moving head side to side "feels" good, ice pack, and wait it out.  This is week 3.  I am learning so much from this website and am anxious to find out if I "belong" here.  Wishing everyone a good day!

Sadly, logic and CH don't mix much. People will have cycles for decades that never change, then go all over the board. The first 20 plus years I NEVER had a wake up headache. That pleasure didn't come until my 40's!

Do continue with the journal, the more info you record, the better the chance for an accurate diagnosis. Glad you found something that helps, the energy drink/ice combo is a common one!

Joe

The one constant about CH is its inconsistancy.  No two of us get it the same, and quite often for episodics not two cycles are the same. 

I started out episodic years ago, and mine were all over the board.  One cycle would be terrible, and the next just uncomfortable.  The uncomfortable ones would have been terrifying before having gotten CH, but being lighter than the cycle before were just "uncomfortable".

You are doing the right thing in keeping track of each occurance, and keeping a record will be very helpful when you find a Dr who is knowledgeable about HA's.

Glad the Red Bull is helping.  I guess I have just been doing this long enough that it no longer keeps me awake.  I got hit Sat while going to my nephews wedding badly enough that I had to have my wife drive.  I quickly slammed one of the double size energy drinks and 10 mins later after the HA quit I went to sleep.  I regularly make a pot of coffee after dinner and drink several cups while fending off the evening hits, then go to bed.  They might get me up a bit later, but they don't keep me from sleeping.

Jerry