Hi all. I have not been diagnosed by a doc. I believe I may be suffering from cluster headaches, or a variant of them. I have had these hideous headaches since the end of January. They feel like no other headache I have ever had before, though the pain is similar to an ice cream headache. It starts with a weird twinge in my neck on the left side. Within 10 minutes, My neck and head(above my neck) begin to throb and there is a deep burning, boring pain. Then my left eye brow area begins to ache. This pain intensifies and then a stabbing pain in my left eye begins. Lying down makes it much worse and I must get up. Sleep is impossible. Nothing takes it away. I have tried 800 mg Motrin, aspirin and, tylenol. It basically has to wear off on its own.

The thing is I don't have any blatant signs - I do not have any redness of my left eye. Perhaps some minor watering, off and on. My left nostril gets somewhat stuffed up, but not really bad. Sometimes it opens up during the attack. I do notice that my left eye is slightly droopy but not just the eyelid, but the eye brow as well. Also, the attacks last typically 5 hours. Much longer that the typical cluster headache.

Once the attack is in full swing, sometimes I will get pain from my neck into my left shoulder sometimes. I also get pain behind my left ear.

The attacks have gone from every day to every other day. They always hit at night, typically beginning around 9:00 PM. Sometimes 11PM. Once I get to sleep(usually around 5 AM) I awaken with very slight symptoms which go away throughout the day. This is followed by complete remission of symptoms, a good nights sleep the following night, and pain free the following day. Once 9PM rolls around, the cycle starts over.

Any insight would be greatly appreciated. BTW, sorry for the long post

It's common for the earliest stages of a new case of Cluster to have symptoms which are quite variable, changing in inntensity, location, etc. Might goon for months, even a couple of years before a stable picture emerges.

Second complicating factor:there are a numbe of disorders which mimic Cluster but which are not primary headache disorders. Some are rather serious. (If you want to  explore his  issue: 
Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache")

Your experience with pain meds is, however, classic Cluster.

Third factor, IF you have Cluster, effective treatments are available but workin thru the multiple treatments, finding a stable package which works, etc. takes time, patience, and the skill of a well trained doc. FAR too man docs have meater training/experience in the complexity of headache, hence, find a specialist to work you thru all these complexies.
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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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You will read any number of "favorite" treatments here but, in the absence of a correct diagnosis, it's quite possible to temporarily suppress your pain without treating the correct disorder: the rationale for taking the time and $ to start with a good doc.

Print the PDF file, below. It will give you an idea of what a good doc will use, assuming you have Cluster.

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  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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Hi Ed and welcome

Just echoing Bob's excellent post in that whilst it sounds a lot like the early stages of CH starting there is the potential for it to be caused by something else or a different headache type or types. Do go to see a headache specialist to get the correct diagnosis and then you can start on the appropriate treatments that will work for you.

Thanks for the replies. I checked out the doctors listed at the other site and see one in my town who I have been to years ago when I was in a car wreck. He is a very excellent neuro. Problem is I am currently unemployed and only carry a high-deductible health insurance. So I need to acquire some cash to see a doc.

I the mean time, I plan on a ten day water fast followed by a ten day breaking of the fast. It's been a year since I went on a longer fast like this so now seems to be as good time as any.

Ed in Pittsburgh wrote on Apr 14^th, 2013 at 6:20pm:

I plan on a ten day water fast followed by a ten day breaking of the fast. It's been a year since I went on a longer fast like this so now seems to be as good time as any.

I'm curious as to what this water fast is and what you think it will do.

I'd strongly suggest you try the vitamin D3 route that so many have had success with.

Mike NZ wrote on Apr 15^th, 2013 at 1:55am:

Ed in Pittsburgh wrote on Apr 14th, 2013 at 6:20pm: I plan on a ten day water fast followed by a ten day breaking of the fast. It's been a year since I went on a longer fast like this so now seems to be as good time as any. I'm curious as to what this water fast is and what you think it will do. I'd strongly suggest you try the vitamin D3 route that so many have had success with.

Hi Mike;

Water fasting that I am speaking of consists of no food whatsoever and drinking 8 glasses of filtered water per day. Breaking the fast typically lasts as long as the water fast and consists of reintroducing foods a little at a time. I begin with oranges, the gradually add other fruits and vegetables, then beans, seeds, nuts, and lean beef, chicken, turkey, and fatty fish. This elicits the body's natural anti-inflammatory and healing responses. It also causes the body to enter preservation mode, sparing muscle and other vital body tissues.

I can tell you for certain, this regimen has reversed my high blood pressure and lowered my fasting glucose levels to the levels that they were in my early 20's. This has also caused an old knee injury to become completely pain free. It was so bad that climbing the stairs was becoming nearly impossible over the years. The defect where the petellar(SP) tendon was partially torn is still there, but it is completely without pain now.   

I have no idea how it will affect my headaches, but at this point, I really have nothing to lose. I will certainly keep you posted.

Hmmm...one of my daughters was born with a disease that caused seizures. At one point, she was started on a high ketone diet. The idea was based on a discovery made while studying fasting effects among a group of monks (so I was told). When the body runs out of glucose to burn for energy it begins using fat, producing a high ketone result. They found epileptic monks with a high ketone output had fewer seizures. It is possible there could be a correlation here to CHs. Don't know. Keep us informed. blessings. lance