Hello all! I am new to this site and am so glad I found you. I was beginning to think I was insane until I found CH on Wikipedia. I guess I'll start from the beginning:

I started getting headaches about 10 years ago. I was a full time scuba diver for awhile so at first I thought I blew out my sinuses. I went to a neurologist. He told me there was nothing wrong. The headaches stopped after a few weeks so I stopped trying to figure out what was wrong. They started up again a few months later so I went to another doctor. This guy sent me for an MRI. Nothing. So, when I went back he told me to take advil and suck it up. This pattern continues to about 2003 when my headache was so bad I had to go to ER. They stuck me in a bed and gave me a shot of morphine. The morphine did NOTHING and it was unbearable that I had to lay there and couldn't move for several hours. They gave me a CAT scan....nothing. At this point I was starting to think I was crazy. Noone believed me or understood. I spent nights hyperventilating so badly that I threw up, and I would rub my head and neck, anything to distract.

I just moved to SLC about a year ago and they came on stronger than ever. I was wondering if it was the high altitude or maybe allergies (that was the only thing I had not gone to the doctor for). So, I got my allergies tested back in August 2008 and alas, I was allergic to everything airborn. I started taking weekly allergy shots...and started getting really excited when my headaches did not appear. This was working!!!!! It was December, over 4 months since the headaches, I starting telling people about it because I was so happy.

Then.....December 30th...damn...back again. I started looking online and found a wikipedia article about CH. This fits exactly! There was a link to this site and I nearly cried when I realized I was not crazy, but many many others were going through the same thing. I had an aweful one the other night. Woke up at 12:30 AM with full blown headache. Vomited from hyperventillating, took until 3:00 AM to fade enough where I could lay down and fall asleep. Woke up at 6:00 AM with headache again....drank a BUNCH of coffee, then the headache moved to a dull one that was present all day but bearable.

So why am I here spilling my guts? I'm hoping someone can help me. I'll list a few things about me specifically and maybe you will have some comments:

1.) Things that slightly help - coffee, fresh air (these only help if I catch in time, nothing helps for a full nlown headache).
2.) I have large knots from stress in my neck and shoulders. I typically get massages once a month but had stopped over the past few months. Did stopping trigger my headaches?
3.) Always on the right side of my head and goes down my neck and into my shoulder.
4.) Always come on at night (anywhere between 8 PM to 1:00 AM).
5.) Alcohol ALWAYS triggers a headache. If i have a drink, I am pretty much guarenteed one of these headaches. Not always a series of headaches for a few weeks, but generally the same night I drink (total bummer, I love to drink socially).
6.) I'm a smoker
7.) They seem to come on in winter and summer but no real cycle that I can tell (I only started journaling in August 2008).
8.) Does anyone know of a doctor in SLC that specializes in this? Every doctor I have been to in the past 10 years either thinks i am exagerating or can not possible comprehend the pain I am in (they have told me migrains or tension headaches...NO WAY!).

Thank you all for any insight you can provide! I'm glad I have found a group of people who share my experiences.

Regards,
Dawn

I am new to this site as well, read all you can, there are thousands of people on this board that know alot more about this subject than I.

Good Luck with the Beast

Rob

See the links on the left side of your screen?  Click the one that says "cluster quiz" and see how you score.  It's by no means a substitute for a definitive diagnosis, but it may give you some insight.

You really need a clear diagnosis before attempting to treat your headaches.  Although it certainly sounds as if you may be getting cluster headaches, there are many conditions that can mimic some of the symptoms of CH.  Get with your doctor and insist on a referral to a neurologist who specializes in headache.  That's the first step.

Whatever's causing your headaches, we'll be glad to help in any way we can.  We're not doctors, but if it turns out that you do have CH, we may be able to suggest treatments and alternatives you can discuss with your physician.

Keep us posted.

BTW, I'm about 5 hours away from you, so in terms of western geography, we're practically neighbors.   ;)

Best wishes, and welcome,

George

A good diagnosis is critical...but damn dude.....you reek of CH!!!! The knot on your back....very common symptom. I get some relief by rubbing it during an attack but just rubbing it hurts like hell!

Alcohol as a trigger....that's very common. If coffee helps, try energy drinks, Rock Star, Monster, any containing the combo of caffeine and taurine. The taurine speeds the effect of the caffeiene. Many can abort an attack or at least substantially reduce the intensity by chugging one at the onset of an attack. Some keep open cans in the fridge so the fizz goes away and it's easier to chug.


For the night time hits....buy some melatonin...an OTC supplement available at vitamin and health food stores. Take 6-9 mg 30 minutes before going to bed. Many can avoid the night time terrors that way. Give it 3-4 days to really atke effect.

If you can get into a decent neuro, most find the best results using a 2 pronged approach.

1: a good prevent. A medication you take when the head aches come back to reduce frequency and intensity. I use lithium, others use verapamil, many to read about on the meds board and discuss with your doc.

2: An abortive. A headache starts, now what? Your first line abortive should be oxygen. I can abort an attack in 6-8 minutes using just oxygen. Works for about 70% of the people who try it. It's cheap, and no side effects. I use imitrex injectables for the real slammers but that's pretty rare these days.

Get thee to a decent neuro, get a solid diagnosis and get going on a decent regimen. Just waiting to get creamed by these things is unacceptable. We'll help you every step of the way. Welcome.

Joe

  OK I'm from the GPNW, but I have no idea where SLC is. Salt Lake City maybe, where they keep the Moron Tabernacle Choir, or some such thing? I am in need of enlightenment.
[smiley=smokin.gif]

Kirk wrote on Jan 11^th, 2009 at 10:13pm:

OK I'm from the GPNW, but I have no idea where SLC is. Salt Lake City maybe [smiley=smokin.gif]

Yeppers.  SLC is basin and range talk for Salt Lake City.   ;)

Best,

George

Thanks for your advice George and Joe! I will start the quest to find a neurologist that specializes in headaches. My luck has been bad so far, but this will be my first try in Salt Lake. I did take the quiz and got a 100% (in this case, I'm not sure if that's a good thing ;) ). I will try the Red Bull and melatonin and work on finding a doc.

Thanks for your support and I'll keep you posted.

Dawn

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. 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.

5. 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.  Call 1-800-643-5552; 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.
=================

 
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 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]

Thanks Bob. I was able to locate a specialist at a headache clinic as you recomended. She is booked until May but at least I know she specializes in headaches. Also started the melatonin last night. I feel like a have a path forward now!

I feel like a have a path forward now!

That's the attitude you'll need! Hang in there. ;)

Joe