[smiley=hiya.gif]Hello all, I'm very new to this forum so any advice is happily received.
I've been suffering from these symptoms since I can remember, probably around 13-14, I'm 22 now. I always chalked them up to be severe headaches, then severe migraines, then just recently decided that something 'else' was going on up there. Currently my husband and I are without insurance so seeing a doctor to tell me what I already assume I'm suffering from is out of the question. My dear husband has been scared out of his mind by these attacks and out of fear searched for symptoms and stumbled upon this site. Thankfully I have him around!

After reading through the Wiki page on symptoms and lightly clicking through some of your posts I'm convinced CHs is what I'm suffering from. I normally experience them through the winter season, normally closer to spring. I cant remember ever having them during any other time of the year, I'm convinced to start journaling my experience to help me narrow it down.
Anyways, like many of you, I feel like death is knocking on my door many times during the day. I believe I'm about to peak because I suffer from multiple episodes during the day/night, but mostly at night when I try to sleep. Before knowing that CHs even existed I was taking all kinds of over the counter medicine to help aid my relief, nothing works(I constantly have stomach pains because of the meds). The only thing that has helped me during these days/nights,is to  gather a warm blanket and lay out my back porch breathing in the freezing cold air and mostly kicking my feet or humming loudly enough to make the dogs bark. I can easily say this pain is worse than child birth, I delivered my daughter without any type of drug, in a warm bath a little over two years ago. I'd rather re-live that birth than deal with these multiple times a day.
I'm sure you all relate, and have heard these stories a thousand times. I just need to talk about this. To suffer with those who suffer. I feel like I'm going nuts when my husband looks at me hovering over the toilet pounding my temple while tears stream from my eyes and snot from my nose. It's such a great feeling to know I'm not the only one pacing and moaning at 2am while others sleep, while others dont fear to fall asleep. Misery loves company as a good friend of mine says, and boy do I know how that feels.
As sick as it sounds, I cannot wait to get to know some of you. To listen to your tales of pain and power, to fight this battle without being alone in the dark...

Thanks for listening. [smiley=hiya.gif]

Our stock advice for new folks: find a headache specialist--not any neurologist. There are dozens of types of headache and another zillion disorders which appear to be Cluster, but which are not. So, good diagnosis and some sophistication in treatment is First Base.
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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. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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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In addition to this article for some basic learning, explore the buttons (left) starting with OUCH and its many internal links.

 
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--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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Pleased that you found us.....

With out a neuro's diagnosis you're playing with fire.  You could have a major brain fart and tip over.  Get diagnosed.

         Potter

You can negotiate a reduced fee and/or a payment plan with a doctor's office. Get a diagnosis.

Folks to talk to re. reduced fee medical care:
social work at the hospital; local United Way organization; state medical society. Negotiate a time pay plan with the doc.

Thank you all for the quick advice. I contacted the closest doctor that is certified through the national headache foundation. Sent him an e-mail asking if we could work out some sort of payment plan. Crossing my fingers that they're willing to help me out, not many doctors in our area are understanding. I tried applying for Medicaid but my husband makes a little too much, and his insurance through blue-cross is outrageous! Looks like I'll be banging my head on the wall a little longer.

Thanks again.

You're on the right path....but for now, get some energy drinks, Monster, Rock Star, any containing the combo of caffeine and taurine. Chug one of these at the first sign of a hit.  It will reduce or even abort the hit for many.

Get some melatonin, OTC available at health food and vitamin stores, start with 3 mg, 20 minutes before bed, increase nightly until you don't get the wake up call from the beast. Helps some sleep through the night.

Welcome to the board, wishing you luck with the doc!

Joe

So you've had these for about 9 years and haven't "had a brain fart and tipped over" yet....if it was me, waiting around for a doc appointment I couldn't afford, I think I'd start in with some trials of the non toxic type CH combatants.

Namely O2, a la the latest oxygen info START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (O2 can potentially be procured without prescription from welding supply places).

Or... medicinal plants such a s RC seeds. More info can be searched for here about that, or found at clusterbusters.com.

Heck if it was me, I'd be out breathing in really cold air deeply thru the nose at the onset of an attack, possibly with ice cubes in the mouth on the side of the hit for 10 -15 minutes. that'll only abort an attack for some of us sometimes, but it's free. The O2 certainly has a better success rate as an abortive.

tassierocks wrote on Feb 15^th, 2010 at 4:48pm:

...not many doctors in our area are understanding. .....

I'm afraid that generally goes for doctors in all areas when irt comes to CH. But at least you found some kinda headache certified doc, that oughta give you a better chance of avoiding the typical bozo MD who doesn't know jack about CH, then proceeds to prescribe practically useless junk for it.

Thanks for the tips. I have no clue how to find an oxygen tank, I do have a friend who welds, maybe he can direct me?

The reason I havent reached out for different answers is because everyone I knew just blew me off, saying I was overreacting or 'faking it'. My husband even admitted to not being sure if I was really in that much pain. We both started to question what was going on when I ended up in the ER while pregnant. They gave me a $300 tylenol 3 and sent my crying butt home. I guess having so many people/doctors brush you off or call you crazy made me suffer in silence these past few years.:(