Hi, I'm Nikki, I'm 30 and I had my first episode about 6 years ago, it lasted about a week, then I had another about 2 years ago of the same duration. then i started this episode 4 weeks ago just a few days after i stopped drinking(I had been drinking regularly after my father passed 4 months ago). This episode has been different then the others, I had regular attacks for the first 9 days at about 1am and 5am at about 15-30minutes total, then I went 2-3 days without an attack, then 2-3 days with 1-2 a night and back and forth of couple days with attacks, couple days without. Also it seems the length of the attacks got longer(sometimes a couple of hours long), I had a mild pain attack last night at about 8pm that lasted atleast an hour before I finally just went to sleep. For the 4 days before last night I wasn't having headaches at night but was waking up with the ache in my face for about the first 1/2 hour to an hour. I was hoping this might be a sign that this episode may be almost over. Glad I found this site and hope to hear some encouraging words. I also should mention that my father had suffered cluster headaches too, he was the one who suggested that that was what was going on with me. Thanks guys.

Since you didn't mention any medical treatment, I'm assuming that you have not seen a headache doc for a work-up leading to the diagnosis of Cluster.

Because there are a number of non-headche conditions which mimic Cluster AND since most docs lack the training and skill to help much in this area, I'd strongly sugget you find a headache specialist for a Dx and ongoing treatment.
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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. 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.

4. 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. 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. 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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Because your attacks have been irregular and short lived, I'd not assume you are experiencing Cluster. So, before you start trying any of the self-help suggestions you'll receive here, it's important to know what you are dealing with.
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FYI:

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]

unfortunately I don't have insurance and no spare money so going to a doctor is impossible at this point. I have researched and learned more about cluster headaches then I ever would of cared to and with having my father diagnosed with them I'm pretty much positive they are CHs. I also took the quiz and it was pretty much dead on. I'm more looking for others experiences with how the headaches are through out the episode, I guess I'm just looking for hope that this episode might be coming to an end. I just want to be normal again.  :-[

also, my previous 2 attacks occurred in the fall and this one in the spring, alcohol will trigger a severe attack for me(which has helped me quit drinking) I had also read magnesium may help and had started taking that and shortly after is when the headaches started skipping days so I think it has been helping. The pain is always on my left side just above my eye, my left sinus feels like it's burning, my left eye will pour tears during an attack and the gums on my left side where my wisdom tooth had been gets swollen. sometimes pressing my hand to my forehead above my eye will dull the pain for a short time too.

Like Bob said, a specialist is always your best bet......sounds like that's just not in the cards for now....so, in order.....

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen, since you don't have insurance welding 02 is much cheaper but just as pure:

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For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

G'day Nikki,
Sorry you had to find us,and unable to get medical attention. I'ts lucky for us here down under that we
have doc's that bulk bill, in other words i'ts free to see
a doctor, and go into hospital if your ill.There have been
studies to determine wether or not CH's are hereditary
but has proved inconclusive thus far.Have you tried
taking Melatonin for your night attacks, you can buy
it OTC when you pick up the D3 Regime.

Good Luck, Hoppy.

Hi Nikki,

Sorry to hear about your insurance situation. Get good diagnosis when you can see a doc. There are a number of things you can do without a prescription and they are detailed around this board in spades. Pounding energy drinks can alleviate the pain for some. Weldors oxygen with a rebreather mask setup is also talked about here. Those are effective abortives for some. Exercise -- vigorous and outside in the fresh air -- helps others. Most of us rely on some sort of abortive when we get hit, but we also, for the most part, use a preventative or two as well. The Vitamin D3 regime is one that's non-prescription. One thing you need to know is nothing works for everyone. Each of us is different and the Beast shows us all a different face. One of the few common threads is we all know pain and we're all trying to deal with this affliction, which we wouldn't even wish on our worst enemy. No one should have to go through this, much less without a doctor to help. There are those of us lucky enough to live in countries where doctor's visits, including emergency room visits are taken care of by the state. There may be help for those who can't afford a specialist's visit in the US, but others are way more qualified than I to talk about that.

Just know the people here understand pain and hate it.

Good luck dealing with the Beast.

Rep

I do find that being outside helps and drinking coffee, unfortunately melatonin isn't an option at the time due to nursing my baby(which also would cancel out some of the other options) but I'm sure by the next episode I'll be done nursing and could try it. I'm honestly just grateful to of found a support group for this and I thank you all for your suggestions.  :)